Issue 3 | April 2018

A DIALOGUE ON HEALTH POLICY Patient- and Family- Centred Care: Focus on Transitions

In This Issue

A DIALOGUE ON HEALTH POLICY April 2018

05 Focusing on Patient- FEATURES ACADEMIC ARTICLES

and Family-Centred Care to Improve 08 Building Bridges: 16 Early Results: Patient Transitions Measuring Continuity Experience Across Across Care Transitions Transitions in a 06 The Patient Journey Bundled Model of Care Knows No Boundaries 28 Can PROMs Transcend Transitions? 24 Improving the Hospital 14 Through the Eyes of Discharge: Focus on Patients and Caregivers: 36 Merging Organizations Sustainability Anita Manley to Improve Continuity of Care for Complex 34 Through the Eyes of SNAPSHOTS Populations Patients and Caregivers: Julie Drury 42 Mining Unstructured 22 Enhancing Care Data to Improve Health Transitions and 40 Through the Eyes of Care Transitions Discharge Planning Patients and Caregivers: Crystal Chin 52 Alternate Level 49 The Missing Peace in of Measurement? End-of-Life Care 56 Through the Eyes of Learning from Patients and Caregivers: ALC Experiences Jeannie Faubert to Improve System

Performance 58 Q&A with Dr. Jon Glasby

Table of Contents Redefining Health Care 3 Acknowledgements

The Ontario Hospital Association (OHA) would like to acknowledge the following individuals for their input and advice on this issue:

Crystal Chin, Patient and Family Advisor

Lena Cuthbertson, Provincial Executive Director, Office of Patient-Centred Measurement and Improvement, BC Ministry of Health

Imtiaz Daniel, Director, Financial Analytics and System Performance, Ontario Hospital Association

Questions? Comments? Julie Drury, Chair of the Minister of Health and Long-Term Care’s Patient Send to Tamarah Harel, Managing Editor and Family Advisory Council [email protected] Jeannie Faubert, Patient and Family Advisor

Tamarah Harel, Public Affairs Specialist, Ontario Hospital Association

Anthony Jonker, Director, Innovation and Data Analytics, Ontario Hospital Association Ontario Hospital Association 200 Front Street W., Suite 2800, Toronto, ON M5V 3L1 Canada Anita Manley, Patient and Family Advisor +1 416 205 1300, oha.com Jane Merkley, Executive Vice President, Chief Nurse Executive and Chief Operating Officer, Sinai Health System

Lesley Moody, Director, Person-Centred Care, Cancer Care Ontario

Emily Myers, Program Lead, Patient Reported Performance Measurement, Ontario Hospital Association

Dr. Gary Newton, President and Chief Executive Officer, Sinai Health System

Lina Neves-Mera, Consultant, Health Policy Issues, Ontario Hosptial Association

Walter Wodchis, Professor, Institute of Health Policy, Management and Evaluation at the University of Toronto, and Research Chair in Implementation and Evaluation Science at the Institute for Better Health, Trillium Health Partners

© Copyright 2018 by the Ontario Hospital Association. All rights reserved. Reproduction in whole or in part without permission of the publisher is prohibited. Points of view expressed do not necessarily represent those of the Ontario Hospital Association. The publisher reserves the right to accept or reject all advertising matter. The publisher assumes no responsibility or safety of unsolicited art, photographs or manuscripts. Printed in Canada.

ISBN # 978-0-88621-361-9

4 April 2018 Table of Contents Foreword from the OHA

Focusing on Patient-and Family-Centred Care to Improve Transitions

The Ontario Hospital Association (OHA) is committed to being a leading contributor in the health policy dialogue by sharing and generating ideas to improve the province’s health care system. As part of this effort, Redefining Health Care was launched in 2016. Since then, the journal has focused on core issues that are pivotal to the health system This issue features a host of perspectives, including transformation underway in Ontario, including health those of patients and caregivers, as well as strategies to system reconfiguration and hospital-physician alignment. improve how we capture and measure the patient and In this issue, the dialogue centres on patient- and family- caregiver voice, and ideas about how we can effectively centred care, within the context of patient care transitions. spread successful initiatives. As patients navigate the bridge between two points of care or two different providers, they are at risk for Undoubtedly, this is a complex and challenging gaps in communication and care. These gaps can lead to undertaking, but a necessary one. adverse events, such as readmission and sub-optimal care outcomes. As a system, that’s what we have found; and more As hospitals evolve beyond their traditional role, and the importantly, it’s what we’ve been hearing from patients. aim of seamless care across the continuum becomes a top priority for the system, patients and caregivers must become Patients have identified care transitions as an area where equal partners in contributing to system improvement. This they continue to struggle due in part to lack of available means attaining better outcomes, safer care and a more supports and collaboration by providers. positive patient and caregiver experience. I sincerely hope you enjoy reading this issue and Ours is a system that is still in transition from a continue to engage with peers, patients and caregivers in characteristically disjointed model, to one that is better important discussions such as these, that will help drive the integrated and can offer a more seamless health care system forward. journey to patients and their families. However, in order to get to our goal, system leaders, health care providers, government and policy makers, have recognized that the involvement of patients and their caregivers is essential. We require the input, guidance and participation of patients Jamie McCracken and their caregivers to understand where the gaps are, Board Chair gauge progress, and ultimately, for long-lasting change to Ontario Hospital Association occur.

Table of Contents Redefining Health Care 5 Letter from the Guest Editor

The Patient Journey Knows No Boundaries

quickly. It was overwhelming news, and what followed was a very stressful and gut-wrenching experience. Despite my background as a nurse and my experience as a leader and hospital CEO, I was not fully prepared for the emotional rollercoaster that came after Bill’s initial diagnosis. Together, we had no choice but to become health care navigators overnight for two separate systems: the hospital system and the home care system. They were two different worlds. There were profound disconnects in Bill’s care and in our relationships with those who were providing it. This became very clear when we found ourselves repeatedly updating a series of home care nurses about our latest experience in hospital or vice-versa. We were overjoyed if the same home care nurse was assigned to us more than once, because this meant we did not have to recount our entire story yet again. I know that the care providers both in hospital and in home care were well-intentioned, but they were hobbled by institutional structures, which are reinforced by differing organizational cultures, rules, paperwork and legislation. Our health care system has been designed with the Living through a critical illness is tough enough care provider and the institution as the starting point, without the additional challenges experienced as the rather than beginning with the needs of patients and patient goes back and forth across silos of care. Examples their families. This traditional approach has led to a include inconsistency in procedures, varying levels of fragmented system, with invisible walls between services quality and safety, incomplete information, gaps in and organizations that often act as significant barriers to communication and multiple caregivers not connected to patient- and family-centred, seamless care. each other. The urgent need to improve is best illustrated by the personal journeys of patients and their loved ones during My husband’s journey led to a clear understanding about their intimate interactions with the health care system. the absolute importance of, and need for “patient care After years as a hospital CEO, I took such a journey and without borders.” it has changed my life. For two-and-a-half years, I helped my husband Bill navigate his way through the system while Providers need to close the gaps that exist between silos he valiantly battled cancer. With one CT scan, our lives and design one continuous, seamless and integrated system changed forever. He was diagnosed with an advanced of care so that patients and their families do not experience stage of cancer and we had to re-set our life priorities very the trauma of needless, frustrating “boundaries” as they

6 April 2018 Table of Contents move between and among various agencies. For us, it There is a wonderful and welcomed awakening within made a tremendous difference when continuity was present the system about the importance of listening to the voices – it made our ability to continue, both physically and of patients and their families, where their input matters. It emotionally, more bearable. When it was lacking, it made is taking place from the boardroom to the bedside, and is an already difficult experience even worse. clearly articulated in the government’s Patients First strategy. Collectively, courageous system leaders have been given What stood out the most for me through this journey is that a profound opportunity to drive real change. I encourage any meaningful and fundamental change must begin with our leaders to put patient and family experience at the leadership and culture. heart of their leadership. Patients and their loved ones deserve nothing less. I strongly believe that consistent, authentic, compassionate, people-centred leadership will create cultures of empathy, learning, engagement, and empowerment where patient- and family-centred care will thrive. The hallmark of such leadership is being humble enough to listen, learn, Bonnie Adamson empathize, and equally important, to partner with patients Supervisor and their families in order to understand their unique Brant Community Healthcare System needs at their great time of need. Former hospital CEO

Patient Experience Surveys

The Ontario Hospital Association’s aim is for Ontario’s hospitals to be equipped with appropriate and effective patient experience measurement resources that enable them to better understand and improve the experience of their patients.

With guidance from the sector, the OHA has been leading ongoing efforts to refresh and enhance the patient experience surveying instruments available to hospitals in the following categories: • Acute Adult Inpatient • Pediatric Inpatient FOR MORE • Emergency Department • Rehabilitation Inpatient INFORMATION, VISIT • Maternity Inpatient NEW – Day Surgery www.oha.com/PEsurveys • Mental Health and Addictions NEW – Outpatient Specialty Clinics

Table of Contents Redefining Health Care 7 FEATURE

Building Bridges: Measuring Continuity Across Care Transitions

By: Lina Neves-Mera and Anthony Jonker

8 April 2018 Table of Contents Currently, there are no existing, validated tools in Ontario, Canada or abroad that effectively measure continuity of care across the full care continuum.

which includes the Ontario Hospital providers and system leaders to Association (OHA) (HQO, 2016). more accurately identify problems However, to the extent that we with care transitions and evaluate atients in Ontario do measure patient experience interventions or policy changes consistently experience around transition planning and aimed at improving continuity and less than favourable management, data from the Canadian meeting patients’ expectations. transitions as they Patient Experience-Inpatient Care Finally, it enhances strategic decision- move across care (CPES-IC) survey in Ontario show making, and the management and Psettings (HQO, 2015). Problematic that experience in this domain is monitoring of how the different parts transitions can occur from and to moderately correlated with overall of the system are working together. every type of health care setting, and patient experience (OHA, 2017). As Without effectively and systematically have been correlated with adverse such, if experience scores in some measuring the experience of patients events, higher readmission rates aspects of continuity (informational, across transitions in care, it is difficult and increased costs (Forster, Murff, managerial and/or relational) to know how these experiences impact Peterson, Gandhi & Bates, 2005). improve, we should expect to see overall experience and other metrics, The quality of a patient’s care some modest improvements in overall such as patient safety associated with transition can be assessed through patient experience scores. medication adherence, readmissions, patient self-reports on surveys that In an effort to stimulate etc. In addition, these metrics include questions or a domain discussion on options for Ontario, this can be trended over time at the focused on “continuity of care”. article conceptualizes a few reasons population level, to pinpoint specific Currently, there are no existing, why this is a worthwhile endeavour, opportunities to improve transitions validated tools in Ontario, Canada and discusses ways of measuring across care settings. or abroad that effectively measure continuity of care. Transition success is not continuity of care across the full care determined at a single moment in continuum. This is acknowledged in time. A tool that measures continuity the 2016 Ontario Patient Experience of care may tell us how patients Strategy developed by Health Why Measure Continuity experience care “on the bridge” Quality Ontario (HQO) and a cross as they cross from one health care section committee of stakeholders, of Care? setting or provider (“the sender”) to another (“the receiver”). To be truly Measuring continuity of care allows actionable, the survey results would patients to share their care transition have to be made available to those experiences in more detail. This involved in the transfer of care, on information allows health care both ends of the bridge, so that they

Table of Contents Redefining Health Care 9 FEATURE

Continuity of Care Defined: Transition success

Continuity is the degree to which a patient experiences a number of discrete health care is not determined events as coherent, connected and consistent with their medical needs and personal at a single moment context. Three types of continuity exist in all care settings:

• “Informational continuity—The use of information on past events and personal in time. circumstances to make current care appropriate for each individual”

• “Management continuity—A consistent and coherent approach to the management of a health condition that is responsive to a patient’s changing needs”

• “Relational continuity—An ongoing therapeutic relationship between a patient and one or more providers”

(Haggerty, Reid, Freeman, Starfield, Adair & McKendry, 2003)

could “see” themselves in the data and use the data to guide improvement strategies for care transitions.

Current State Other patient experience surveys for parties on either side of the bridge are used for similar purposes in other to use the data together to hone The OHA has helped hospitals sectors, such as primary care, mental in on problem areas and focused measure patient experience for the health and long-term care. While opportunities for improvement. past two decades. Many health care many existing sector-specific surveys Some of the challenges in providers and organizations are have standardized questions related measuring continuity of care and using longitudinal, post-discharge to continuity of care, the questions do sharing the results with “senders” surveys that provide rich information not capture sufficient information in and “receivers” could be addressed on a number of domains that make this area. For example, the questions if patients transitioned across a more up the patient experience. These in the CPES-IC related to continuity of integrated system. Ontario has started surveys focus on particular hospital care are specific to activities within the to explore this through the integrated care settings, conditions, or patient hospital and prior to discharge, but funding model (IFM) pilots, a model populations. For example, the do not address elements of continuity of care that breaks down the silos by Ontario Emergency Department after the patient leaves the hospital. bundling care across different sectors. Patient Experience of Care Survey As such, the hospital “senders” are Because services within care bundles and the CPES-IC are tools that left in the dark about the experiences are defined, providers on both ends of measure the patient experience for of their patients once they leave the bridge are more easily identified emergency department and inpatient their facilities. Furthermore, patient and connected than in non-integrated hospital care, respectively. experience results are not shared with care models. This care model has the “receivers”, which makes it difficult potential to create a more seamless

10 April 2018 Table of Contents transition experience for patients Adding questions to sector- Despite the challenges and caregivers, and enables one lead specific surveys, however, has with this approach, it would organization to take responsibility for its barriers. Survey space is at a nonetheless provide a pragmatic, experience measurement. Because of premium and in an effort to keep short-term solution to the paucity this shared accountability among all length and costs down, this means of data about continuity of care care providers involved, this approach only a few questions can be added, that currently exists. encourages “senders” and “receivers” possibly at the cost of removing to come together to use the data as a existing questions. Moreover, 2. General Continuity of Care catalyst to improve patient experience. there are no available mechanisms Survey to identify or share experience Developing a new survey results with others sharing in specifically designed to measure responsibilities of patients.. continuity of care would enable Conceptualizing a Tool Given the length of current the multidimensional aspects surveys, it may not be possible of the concept, as identified for Ontario to comprehensively measure by Haggerty et al. (2003), to continuity of care or to obtain the be measured comprehensively Notwithstanding the potential level of granularity required for (i.e., information, managerial, offered by bundled care models, actionable improvement at the relational continuity). The Ontario continues to be a largely ground level. The best one could development of the survey would siloed health delivery system where hope for is a better understanding be done in collaboration with measurement of continuity across of patients’ experience with stakeholders on “both sides of the different health sectors is poor. In an the activities that occurred in a bridge”, including patient and effort to encourage the measurement specific sector. However, to be caregiver advisors. of continuity of care, three conceptual able to identify improvement The survey questions approaches could be considered for opportunities for patients across could seek to cover all patient today’s environment. care settings, there would need populations regardless of disease to be questions related to both or care setting. It would address 1. Sector-Specific Surveys sending and receiving health movement across the health The first approach would be care providers as well as a way to care system as a whole, from the to use sector-specific surveys as identify and share results with perspective of the patient, and a vehicle to better understand those providers. would include questions that continuity of care across settings. One more consideration is address the patient’s continuity This would involve supplementing that some sector surveys (e.g., experience with their general the existing surveys to better hospital) are designed to seek practitioner, specialists, therapists, capture continuity. British patient responses as soon as 48 and home care supports. Columbia’s Patient Reported hours after the patient encounter At its best, it would identify Experience Measures Steering ends. Patients do not fully the care settings in order to Committee has developed a module, experience many aspects of a allow the patient to be directed continuity across care transitions, transition plan within 48 hours to questions in the survey which is appended to existing following an encounter. As such, appropriate to that type of in-patient experience surveys to patients may not feel as though transition. This approach should better measure the continuity they can provide comprehensive be designed to enable the sharing experience of patients upon feedback about their transition of results with health care teams discharge from hospital. experiences when their opinions who are directly involved in may only be partly formed or not patients’ transitions. With this yet crystallized.

Table of Contents Redefining Health Care 11 FEATURE

level of granularity, health care 3. A Hybrid Model their home setting. By linking teams in each setting would be The third option presents a hybrid the survey results to the specific able to “see themselves” in the of the previous two models that organizations that served that data and because questions would goes further than the first, and patient, the results could be be designed to be actionable, it while less comprehensive than a shared with both sides of the would be easier to identify what general continuity survey, may be bridge which is a significant needs to change. more readily achievable. It focuses enhancement over current Some may suggest that a on the experience of patients practice. This is one of the major survey that covers all patient who have transitioned between benefits of this model as it would populations and addresses hospitals and other care settings, provide a level of specificity that care across the health system whether to another facility or to care providers and administrators as a whole would be too broad. the community. There are many across the health care system Instead, some may propose important transitions that are could leverage for actionable the development of multiple not covered in this model, as this improvements along with rich surveys, one for every transition model compromises breadth in aggregate data to broadly track type (e.g., the transition from favour of relative simplicity. performance. hospital to home, or from home In this continuity of care Although this model is not to long-term care). The reality surveying model, hospitals universal, it could be argued that is, however, people do not move would identify patients that it is an important place to begin across the system in a linear have transitioned out of hospital improving the measurement of fashion. Moreover, as patients live along with information about continuity given that hospital longer with complex and chronic the specific care setting to care, unlike other care settings, is illnesses, some may feel that their which they transitioned (e.g., always intended to be transitional. transitions between care providers home, specific rehabilitation It is also known that a large and settings do not really “start” centre, specific long-term care volume of concerns from patients and “end”. home, etc.). A random sample and caregivers about public Developing and of patients would be sent a hospitals is related to experiences operationalizing a survey general continuity of care survey with discharge, as evidenced in generic enough to cover all applicable to all transition types. the Patient Ombudsman’s Annual patient populations across all However, a module specific to Report (2017). types of transitions would be their transition route would complicated. For example, be appended to the general who would be responsible for survey. This module would ask identifying the patients to survey, a few short questions about the Real-Time Measurement administering the survey and patient’s experience transitioning disseminating the results to the across care settings and would in Parallel “senders” and the “receivers”? enable the identification of the This becomes especially complex providers and organizations Real-time or near real-time when multiple providers are involved. For example, a person measurement occurs at the moment of involved on both sides of the discharged with a plan to receive or shortly after care delivery. It allows bridge. The nature of Ontario’s home care would receive an patients the opportunity to provide fragmented health system additional short set of questions immediate feedback about their makes these operational factors relating to the experiences of care experiences and is oftentimes used by particularly challenging. continuity between hospital and health care providers to drive quality

12 April 2018 Table of Contents More importantly still, throughout If a new approach is considered, it will the process of designing a solution be important that this tool captures the to measure continuity of care in Ontario and in order to share data multidimensional aspects of continuity across providers, patients, caregivers and providers must all be engaged to of care and reaches further than ensure that the approach reflects their activities in one sector. perspectives and experiences.

Lina Neves-Mera is Consultant, Health Policy Issues and Anthony Jonker is improvement by seeking to benefit An important consideration Director of Innovation and Data Analytics from its rapid-cycle nature. However, is that service recovery can only for the Ontario Hospital Association. transitions are not a moment in time; happen when patient feedback is not they are broad, complex, non-linear anonymous. Without anonymity, and for some complex patients, they there is a risk that patients may be References are perpetual. reluctant to be honest with their Applying the value of real-time responses when experiences were Forster, A., Murff, H.J., Peterson, J.F., Gandhi, T.K. & Bates, D.W. (2005). Adverse to this problem requires a different less than positive. This is one of drug events occurring following hospital approach to patient experience the reasons why anonymized, post- discharge. Journal of General Internal Medicine, measurement. Consider the idea of discharge measure tools will continue 20(4), 317-323. surveying patients more frequently, to be important to reduce bias and Haggerty, J.L., Reid, R.J., Freeman, but with only a few questions specific promote honest reflections on the G.K., Starfield, B.H., Adair, C.E., & to their position on the transition experience. McKendry, R. (2003). Continuity of care: a bridge. For example, this may multidisciplinary review, BMJ, 327(7425), include at the bedside prior to being 1219-1221. discharged from hospital, 24-hours Health Quality Ontario (HQO) (2015). after arriving at home, and a few days Measuring Up: A yearly report on how Final Thoughts Ontario’s health system is performing. after being home. The advantage of Retrieved from http://www.hqontario. real-time measurement is that it can Like many other jurisdictions, ca/System-Performance/Yearly-Reports/ provide immediate information about Ontario currently does not capture Measuring-Up-2015 the patient’s experience that could be the lived experiences of patients as Health Quality Ontario (HQO) (2016). used to alert care providers on both they move across care settings. If a Ontario Patient Experience Measurement sides of the bridge and for service new approach is considered, it will be Strategy. Retrieved from http://www. recovery – or taking immediate action important that this tool captures the hqontario.ca/System-Performance/Health- System-Performance/Patient-Experience- to respond to patients when they multidimensional aspects of continuity Measuring-what-matters have less than positive experiences. of care and reaches further than Patient Ombudsman (2017). Fearless: Over time, patterns of deficiencies in activities in one sector. Listening, Learning, Leading; Annual continuity of care could be extracted It will also be important to Report 2016/17. Retrieved from https:// to inform quality improvement consider an approach that enables patientombudsman.ca/Portals/0/ opportunities, drive accountability, sharing of results with the providers documents/Annual_Report_Final_EN.PDF measure how different parts of the and organizations involved during system are working together and transitions in care, so that the data can improve the patient experience. be used to improve care for patients.

Table of Contents Redefining Health Care 13 1. Can you describe an experience when you Through the Eyes transitioned from one health care setting to of Patients and another? Caregivers: The transition from The Royal‘s Recovery Unit to home was a big one for me. I had been homeless for almost three years prior to my seven-month hospitalization. Moving into Anita Manley my own place with my own bed seemed like a dream, but it Redefining Health Carespoke to had its challenges as well. I had not managed a budget nor had I been shopping for groceries for years. a number of former patients and My first task was to completely furnish my apartment caregivers to ask for their view on a tight budget. I accomplished this task on budget and had everything moved in before discharge. The hospital about care transitions. gave me the time I needed to set up my apartment; they didn’t rush my transition at all. I had help from a friend I had Anita is a mental health advocate, advisor and peer met in the hospital, my daughter and support workers from facilitator. At The Royal, she volunteers as a peer the community. I also went grocery shopping, feeling very supporter for the Women’s Mental Health Program, anxious. What should I buy? How much will it cost? Over was a member of the Client Advisory Council for time, my anxiety lessened. five years, and former Editor of The Client’s Voice I was discharged from The Royal to the care of the Newsletter. Anita represents The Royal as a patient Assertive Community Treatment Team (ACTT). They advisor for the Resource Development Advisory were like a hospital on wheels. The team that cared for me Group at Health Quality Ontario and is Co-Chair included a recreational therapist, a nurse, a social worker, of the Champlain Local Health Integration Network a peer support worker and, of course, a psychiatrist. This (LHIN) Patient and Family Advisory Committee team was instrumental in supporting my transition. I met (PFAC). Previously, Anita was a Co-Chair of the with someone on the team in the community weekly. I really Champlain Peer Network, The Ottawa Hospital felt like they were my friends. I could talk to them about Mental Health Community Advisory Committee anything. Following my discharge from the hospital, I also and a Board Member of The Canadian Mental had some medical appointments that caused me to feel Health Association - Ottawa Branch. Anita’s special quite anxious. accomplishments include being a recipient of The Royal’s 2015 Inspiration Award and a proud mom of two grown daughters. The ACTT supported me throughout all my medical appointments. They drove me to appointments and held my hand throughout the whole process. I found this to be very helpful for my recovery

14 April 2018 Table of Contents and transition as I had lost all my friends 3. What could have been done differently to due to symptoms of my mental illness make the experience better for you? and homelessness. Overall, my transition experience was quite positive. However, if the ACTT had anticipated some of my 2. Can you reflect on how your transition needs prior to discharge, perhaps I would have felt less overwhelmed and anxious. impacted you and/or your caregiver? For example, knowing that I had not managed a budget I would meet with my psychiatrist about once every two or grocery shopped in years, the ACTT staff could have months, but she would keep close tabs on me through her worked with me on those skills after my hospitalization. team members. For example, I bumped into my psychiatrist when I was volunteering at the hospital. She had already known from her team member (with whom I had met the previous day) that I had visited a family member in Toronto the previous week! Overall, my transition from hospital to the community went well. I knew that if at anytime I needed to see my psychiatrist, the team would be in touch with her right away and I could get an appointment to see her almost immediately. Despite my overall positive transition experience, I found that the information from the staff at The Royal was not shared very well at first with the psychiatrist on the ACTT. Initially, the ACTT psychiatrist wanted to put me on a Community Treatment Order (CTO) so someone on the team could visit me every night to ensure that I was taking my medications. What was not communicated with the ACTT by the hospital staff was that I was very compliant with my medications in hospital and I agreed to take them voluntarily at home. Eventually, they decided against a CTO, but the stress that this situation caused me could have been avoided had there been better communication between the hospital and the community teams. Apart from the care providers within the ACTT, my daughter played a big role in my transition from hospital. Although she was just a teenager at the time, she always managed to come visit and help out with anything I needed at home.

Table of Contents Redefining Health Care 15 ACADEMIC ARTICLE

Early Results: Patient Experience Across Transitions in a Bundled Model of Care

By: Sydney Jopling, Kevin Walker and Walter P. Wodchis Bundled care is an intervention that evolved out of the effort to reduce Fragmented and poorly coordinated care throughout episodes of care hospital readmission rates and also involving multiple providers, and particularly at points of transition between targets many of the elements of care levels of care, can put patients at risk for adverse health events and less than transitions, such as patient education, optimal quality of life outcomes. Research demonstrates that poorly managed discharge planning, medication care transitions also negatively affect patients’ and caregivers’ experience reconciliation, and timely follow-up of and satisfaction with care. To address this issue, Ontario and many other (see Box 1). The Ontario Ministry of Health jurisdictions have undertaken numerous initiatives to ensure a seamless care and Long-Term Care (MOHLTC) experience for patients and families. Care transitions have long been a focus introduced its own bundled care of improvement efforts, largely because ineffectively managed transitions initiative in February 2015 with the have been associated with increased hospital readmission rates and costs. Integrated Funding Models (IFM) pilot project. The objective of the pilot project was to test innovative approaches to integrated (i.e., bundled) funding for a specific episode of care and to coordinate resources across acute and post-acute care settings. The MOHLTC put out a call Care transitions have long been a focus of for proposals, for which applicants were free to choose their episode of improvement efforts, largely because ineffectively focus (e.g., congestive heart failure, managed transitions have been associated with stroke, cardiac surgery, urinary tract infection, etc.), design their care increased hospital readmission rates and costs. pathway, select the length of the bundle period, and decide which health care providers were included. Six programs across six Local Health Integration Networks (LHINs) were selected to take part in the pilot project.

16 April 2018 Table of Contents The Health System Performance in an integrated model of care based Ontario hospitals (see Box 2). HSPRN Research Network (HSPRN) was on a survey of patients enrolled in the received aggregate CPES-IC data from tasked by the MOHLTC to conduct six selected programs. the Ontario Hospital Association. a central evaluation of the IFM pilot Questions common to both the There were seven questions program and to measure patient IFM Patient Experience Survey (PES) related to patient experience common experience with each of and the Canadian Patient Experience to both the IFM PES and CPES-IC. the programs. Survey – Inpatient Care (CPES-IC) The proportions of top-box response, This article describes the patient were used to compare IFM patients’ which refers to the most positive experience with acute care, post-acute experience with hospital care and response option, were compared care, and across the transition from discharge with that of other medical between samples. hospital to home and the community and surgical patients discharged from Findings Box 1 Sample Size Between April 1, 2016 and March 31, Bundled Care Model: Quick Facts 2017, 3,034 patients were enrolled in the six IFM programs, 1,007 of Bundled care is a model of service delivery that packages services from multiple whom provided permission to share providers into a single care pathway (Jacobs et al. 2015), allowing for improved contact information with HSPRN. A coordination and continuity of care across the continuum of care settings and providers stratified random sample of up to 20 (Ouwens, Wollersheim, Hermens, Hulscher & Grol, 2005; Goddard & Mason, 2017). patients per program, per month were selected. Out of 770 patients who were Bundled care models are patient-centred; they wrap care around the patient (National contacted for consent to participate Collaboration for Integrated Care and Support, 2015) and have been shown to improve in the PES, 431 patients completed patient satisfaction with care (Mason et al., 2015). Many bundled care models also the survey and were included in the bundle funding by using a single, fixed payment to cover the entire package of services results (approximately 56.0 per cent across multiple providers (Jacobs, Daniel, Baker, Brown & Wodchis, 2015). response rate). The CPES-IC was administered Box 2 by NRC Health at more than 60 acute care hospitals across Ontario between April 1, 2016 and March 31, 2017, HSPRN Patient Experience Survey sampling a total of 99,892 patients. Of those sampled, 37,084 patients The HSPRN developed a novel survey tool that measures patient experience across completed the survey (39.2 per cent multiple care settings, combining items from a number of existing, validated surveys – response rate). including the CPES-IC. Data collected with the IFM PES is not evaluative; it was intended Unfortunately, it was not possible as a quality improvement tool for the IFM programs, who received monthly or bimonthly to compare the IFM PES and CPES-IC reports with aggregate results and anonymous patient comments. samples in terms of demographics; most of the questions differed Canadian Patient Experience Survey – Inpatient Care between the two surveys, and for The CPES-IC is a pan-Canadian survey that was developed in 2011 by the Canadian those questions that were relatively Institute for Health Information (CIHI) based largely on the U.S. HCAHPS survey. It similar (e.g., age, race/ethnicity), measures patient experience with acute adult inpatient care (CIHI, 2015a). the surveys provided different response options.

Table of Contents Redefining Health Care 17 ACADEMIC ARTICLE

Survey Results Table 1: IFM PES and CPES-IC questions related to experience in hospital Experience in Hospital IFM PES CPES-IC Question In hospital, IFM patients reported a similar experience to the general Question 1 Question 30 Do you feel that there was good communication about your Ontario population. While results care between doctors, nurses and other hospital staff? from the four common items Question 2 Question 32 How often were tests and procedures done when you were (Table 1) did not differ significantly told they would be done? at p<0.05, IFM PES respondents Question 3 Question 33 During this hospital stay, did you get all the information you answered slightly more positively needed about your condition and treatment? regarding information given in Question 4 Question 34 Did you get the support you needed to help you with any hospital, reporting that they received anxieties, fears or worries you had during this hospital stay? the information they needed about their condition and treatment more often than CPES-IC respondents: 65.7 Table 2: IFM PES and CPES-IC questions related to experience with per cent of IFM patients sampled responded “Always” as compared to discharge from hospital 61.6 per cent of patients completing IFM PES CPES-IC Question the CPES-IC (P=0.093; Figure 1). Question 7 Question 37 When you left the hospital, you clearly understood the Experience with Discharge from Hospital purpose for taking each of your medications? There were mixed results for CPES-IC version: Before you left the hospital, did you questions regarding preparedness for have a clear understanding about all of your prescribed discharge and discharge planning medications, including those you were taking before your (Table 2). IFM patients reported a hospital stay? significantly better experience than CPES-IC respondents with respect to Question 9 Question 38 Did you receive enough information from hospital staff about discussions with hospital staff about what to do if you were worried about your condition or the support they were going to receive treatment after you left the hospital? after discharge (IFM, 89.9 per cent Question 10 Question 19 During this hospital stay, did doctors, nurses or other hospital “Yes” vs. CPES-IC, 76.9 per cent, staff talk with you about whether you would have the help P=0.000; Figure 1). These results are you needed when you left the hospital? not surprising, as each of the IFM programs stipulated a structured care pathway in the community per cent fewer IFM PES respondents population of the IFM programs; after leaving the hospital, with strongly agreed that they clearly many of the programs focused varying levels of care depending on understood the purpose for taking specifically on patient populations patient need. their medications compared to with a high degree of multi-morbidity, In contrast, the IFM programs CPES-IC respondents (IFM, 47.5 which may be associated with a high did not have a strong performance per cent “strongly agreed” vs. 76.5 number of medications. The greater in patients’ understanding of their per cent CPES-IC, P=0.000; Figure complexity of the IFM PES patient medication, an element of transitions 1). These results may be associated sample is reflected in the patient where one would expect to see with medication reconciliation in reported outcomes, where IFM PES improvement in a bundled care hospital, but may also be affected by respondents were more likely to rate model. Notably, approximately 30 characteristics of the target patient their physical health as “Poor” or

18 April 2018 Table of Contents “Fair” and less likely to rate it as “Very Figure 1: IFM PES versus CPES-IC Top-Box Results Good” or “Excellent” than the CPES- (Please see Tables 1 and 2 for questions) IC sample (see Figure 2). The IFM PES patient sample also reported less positive outcomes than the CPES-IC IFM PES “Always” sample in terms of self-assessed mental CPES-IC health status (Figure 2). There was no statistically IFM PES “Always” significant difference in the percent of top-box responses between IFM PES CPES-IC and CPES-IC respondents when asked if they received enough information IFM PES “Always” about what to do if they were anxious about their condition or treatment Stay During Hospital CPES-IC after leaving the hospital (IFM, 54.8 per cent vs. CPES-IC 58.2 per cent, IFM PES “Always” P=0.174; Figure 1). CPES-IC

Experience in Community IFM PES “Strongly Agree” Standardized questions about patient experience in the community after CPES-IC leaving hospital were not included in the CPES-IC. The authors, therefore, IFM PES “Completely” had limited published comparable results for Ontario, with the CPES-IC exception of The Commonwealth

Fund 2014 survey. Hospital Leaving Before IFM “Yes”

Q1/Q30 Q2/Q32 Q3/Q33 Q4/Q34 Q7/Q37 Q9/Q38 Q10/Q19 CPES-IC

0 20% 40% 60% 80% 100%

Figure 2: IFM PES versus CPES-IC Patient Reported Health Outcomes

IFM (Total n-size 405)

Health CPES-IC (Total n-size 35,722) Overall Physical Physical Overall

IFM PES (Total n-size 402)

CPES-IC (Total n-size 35,707) Emotional Health Overall Mental or Mental Overall 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Excellent Very Good Good Fair Poor

Table of Contents Redefining Health Care 19 ACADEMIC ARTICLE

The novel IFM PES survey tool provides an performed better than other hospitals in Ontario on some patient important contribution to the measurement of patient experience items related to care transitions, including information experience with bundled care, and allows researchers delivered to patients in hospital and and stakeholders to measure patient experience communication with patients about post-discharge support. In addition, both in the hospital and following their transition out information transfer from hospital to into the community. the community and care coordination received excellent ratings from IFM patients. However, the results also Information transfer from the not communicated amongst providers. indicated that patient understanding hospital to community providers So, while information is transferred of medications prior to discharge (including primary care) as between settings, there is room for from acute care (perhaps related to perceived by IFM respondents was improvement in communication if medication reconciliation) presents an area of excellent performance. this information is changed over the an area for improvement. 88.3 per cent of the IFM patient course of the episode. A limitation of this work is the sample indicated that their primary When asked if there was one lack of controlling for differences in care practice, or the location person that ensured the follow up of the IFM PES and CPES-IC patient where they usually received care, their care, 81.9 per cent of the IFM samples. Poorer self-reported health seemed informed and up-to-date PES patient sample selected “Yes”. status, potentially indicative of higher about the care they received in the These results reflect that five of the levels of complexity in the IFM patient hospital compared to 82 per cent six IFM programs embedded a population, may have important of Ontarians who responded to the designated care coordinator into the implications for the results presented 2014 Commonwealth Fund Survey care pathway. here and may limit comparability of who indicated that their place of the IFM PES and CPES-IC results. usual care was up-to-date about Final Thoughts The IFM programs targeted patient care they received from a specialist populations where clinical outcomes (CIHI, 2015b); and 90.8 per cent As far as the authors are aware, the and patient experience were thought of IFM PES respondents answered IFM PES represents the first survey to be sub-optimal. However, CPES-IC “Yes” when asked the same question tool that measures the patient results currently cannot be limited with regards to the health care team experience from acute through post- to specific (comparable) clinical in the community (i.e., health care acute care. Such a tool is invaluable populations and a fully comparable providers associated with the bundled to better understanding care across sample could not be identified. care program). Despite very positive multiple settings throughout a care Furthermore, while stratified random ratings of information transfer episode, an understanding that is vital sampling was used, there was a large from the hospital to community to the patient experience, and more proportion of IFM patients who providers, only two-thirds of IFM PES importantly, to health outcomes and did not provide permission to be respondents answered that they never quality of care. contacted by researchers, as well as received information from providers This preliminary investigation some who once contacted did not wish in the community that conflicted with showed that on most questions about to participate for various reasons (e.g., information given in the hospital. their care experience, patients in the too ill, uncomfortable responding in Similarly, only 67.0 per cent thought MOHLTC’s IFM initiative reported English). As such, the authors cannot that there was never a time that similar ratings to other Ontario be certain that the results from the changes to the treatment plan were hospital patients. IFM programs sample are representative of the entire IFM patient population.

20 April 2018 Table of Contents Three additional insights stem from our experience with the IFM Sydney Jopling is Research Assistant, Health System Performance Research Network, PES. First is the added value of University of Toronto. being able to use patient experience surveys to assess the experience of Kevin Walker is Senior Research Associate, Health System Performance Research specific clinical groups. Adding this Network, University of Toronto. capability to the general CPES-IC will greatly enhance our ability to Walter P. Wodchis is Principal Investigator for the Health System Performance Research identify subpopulations with high Network; Professor, University of Toronto; and Research Chair in Implementation and opportunities to improve patient Evaluation Science, Institute for Better Health. experience. Second, the use of PES data to measure patient experience References is central to the evaluation of health systems and even to include as part of Arora, V.M., Prochaska, M.L., Farnan, J.M., D’Arcy, M.J., Schwarz, K.J., Davis, A.M...Johnson, J.K. (2015). Problems after discharge and understanding of communication with their primary care joint accountability and remuneration physicians among hospitalized seniors: A mixed methods study. J Hosp Med., 5(7), 385-391. in episode-based bundled care Baillie L., Gallini A., Corser R., Elworthy G., Scotcher A. & Barrand A. (2014). Care transitions for initiatives. Third is the importance frail, older people from acute hospital wards within an integrated healthcare system in England. of engaging patients directly in International Journal of Integrated Care (Jan-Mar), 14. https://www.ncbi.nlm.nih.gov/pmc/articles/ the selection of patient experience PMC4027893/ survey questions. The IFM PES and Canadian Institute for Health Information. (2015a). Canadian Preliminary Core Patient Experience the CPES-IC were created by survey Measures: Acute Inpatient Care. Retrieved from https://www.cihi.ca/sites/default/files/document/ experts and stakeholders and may patient_reported_experience_measure_technotes_enweb.pdf not fully represent outcomes of Canadian Institute for Health Information. (2015b) How Canada Compares: Results from the importance to specific populations, Commonwealth Fund 2014 International Health Policy Survey of Older Adults. Retrieved from https:// nor reflect all services received during www.cihi.ca/sites/default/files/document/commonwealth_fund_2015_pdf_en.pdf the bundle period for all patients Coleman E.A., Parry C., Chalmers S. & Min S. (2006). The Care Transitions intervention: Results (e.g., there were no questions on of a randomized controlled trial. Arch intern Med. (166), 1822-1828. the IFM PES specific to inpatient Coleman E.A., Smith J.D., Frank J.C., Min A., Parry C., Kramer, A.M. (2004). Preparing patients rehabilitation). and caregivers to participate in care delivered across settings: The Care Transitions intervention. J Am Geriatr Soc. (52), 1817-1825. Despite these limitations, the novel IFM PES survey tool provides Goddard M. & Mason A.R. (2017). Integrated Care: A Pill for All Ills? International Journal of Health Policy and Management 6(1), 1-3. an important contribution to the measurement of patient experience Jacobs J., Daniel I., Baker G.R., Brown A. & Wodchis W.P. (2015). Bundling Care and Payment: Evidence from Early-Adopters. Redefining Health Care: Health System Configuration. Toronto, ON: with bundled care, and allows Ontario Hospital Association. researchers and stakeholders to Johri M., Beland F. & Bergman H. (2003). International experiments in integrated care for the measure patient experience both elderly: a synthesis of the evidence. Int J Geriatr Psychiatry 18(3), 222-235. in the hospital and following their Mason A., Goddard M., Weatherly H. & Chalkley M. (2015). Integrating funds for health and transition out into the community. social care: an evidence review. J Health Serv Res Policy 20(3), 177-188. The IFM PES survey tool demonstrates National Collaboration for Integrated Care and Support. (2013). Integrated care and support: our the importance of continuing to shared commitment. London, England: Department of Health. develop and validate tools that allow Naylor, M.D., Aiken, L.H., Kurtzman, E.T., Olds & D.M., Hirschman, K.B. (2011). The importance researchers and stakeholders to better of transitional care in achieving health reform. Health Affairs 30(4), 746-754. understand patients’ experience of Ouwens, M., Wollersheim, H., Hermens, R., Hulscher & M., Grol, R. (2005). Integrated care care as they move across sectors in the programmes for chronically ill patients: a review of systematic reviews. International Journal for health care system. Quality in Health Care 17(2),141-146.

Table of Contents Redefining Health Care 21

SNAPSHOT

Enhancing Care Transitions

and Discharge Planning How the Markham Family Health Team integrated interdisciplinary health professionals to improve patient outcomes and experiences

By: Dr. Allan Grill The Markham Family In 2015, the Markham Family Health Health Team incorporates PCPs, which include family physicians Team (MFHT), which is affiliated the phrase ‘Care for a Lifetime’ as well as nurse practitioners, play with Markham Stouffville Hospital in its mission statement. Established an especially important role in care (MSH), launched the Transitions in 2007, the FHT consists of transitions as the frontline coordinator Program in response to feedback physicians and interdisciplinary of a patient’s care. Keeping them from our patients about their health providers to manage the informed can help patients understand hospital discharge experiences. In primary care of 27,000 their discharge plans, avoid getting particular, some patients (e.g., frail, patients. lost to follow-up, and prevent any further older adults) had noted difficulties in decline in their health (HQO, 2016). arranging their own follow-up care. Prompted by the feedback provided While care transitions involve various settings by patients, Dr. Steve McLaren, a family physician including, but not limited to, emergency rooms, hospitals, at MFHT, decided to investigate whether the FHT rehabilitation facilities, nursing homes, and outpatient could address the above-mentioned unmet care gaps specialty clinics coupled with multiple clinical providers identified by patients. In partnership with MFHT nurse (e.g., physicians, physiotherapists, social workers, nurses, Danielle Meads, he performed a needs assessment using etc.), discharge from acute care to another care setting outpatient electronic medical record (EMR) data. This often puts patients at greater risk for sub-optimal care if led to the development of a draft list of goals that could be not properly coordinated (HQO, 2013a; HQO, 2016). achieved if a nurse from the MFHT assisted with hospital discharge planning; these included: Surprisingly, 20-30 per cent of emergency • Sharing diagnostic information – patients could be room patients presenting with exacerbations better educated about their medical condition(s) related to Chronic Obstructive Pulmonary and reason for hospital admission (HQO, 2013a; Disease (COPD), Congestive Heart Failure HQO, 2016). This could reduce patient anxiety (CHF), or diabetes do not arrange follow-up and confusion given that only 59.6 per cent of appointments within 30 days. inpatients can accurately describe their diagnoses (Kripalani, 2017). Moreover, patients often have multiple questions • Continuity of care – patients can be reassured that regarding medication changes and test results, and their PCP is aware of their hospitalization. This discovering their primary care provider (PCP) has not improves overall communication (HQO, 2016). been fully informed adds to their list of worries. • Discharge planning – patients can receive assistance with arranging follow-up services (e.g., removing 22 April 2018 Table of Contents

surgical staples, newborn weight checks, house calls, and experiences is also underway. An RN uses EMR home care visits, etc.) promptly with the appropriate tracking codes to help measure various services, such clinical provider (HQO, 2016). This would increase as total number of assessments, readmissions within accountability as only 43.9 per cent of patients can 30 days, and average time before an office follow-up accurately recall upcoming follow-up appointments appointment takes place. Qualitative feedback from (Kripalani, 2017). patients and caregivers is also being recorded. • Arranging a post-discharge medication reconciliation Efforts to reduce hospital readmissions through with the MFHT pharmacist (HQO, 2016; Kripalani, improved care transitions are a health system priority in 2017) . Ontario (MOHLTC, 2011; HQO, 2013a; HQO, 2013b; HQO, 2016). PCPs can play a crucial role in achieving Approximately one-third of patients have this goal through improved stakeholder collaboration difficulty understanding their discharge within a patient’s circle of care. medication regimen. The MFHT Transitions Program is an innovative An important next step was to build stakeholder model aimed at enhancing hospital discharge planning, relationships by meeting with the MSH leadership. This continuity of care and patient and provider satisfaction. helped staff better understand hospital workflow, identify Ongoing quality improvement research and analysis which inpatients had the greatest needs, and address using EMR data, as well as experience data from patients existing gaps in hospital discharge planning related to in this area, is required to determine measurable benefits. primary care. Working together with MSH enabled access and training on the hospital EMR system in order Dr. Grill is a family physician and Assistant Professor in the to track MFHT patient admissions in real time. Department of Family & Community Medicine at the University of At present, the program is resourced with an Toronto. He enjoys an active community-based clinical practice and administrative staff person who searches the MSH EMR has a staff appointment at Markham Stouffville Hospital. Dr. Grill system for MFHT admitted and discharged patients was awarded the Canadian Certified Physician Executive credential on a daily basis (Monday through Friday). A full-time in 2016 and serves in several primary care leadership roles, registered nurse (RN) then receives this list and arranges including the Lead Physician at the Markham Family Health Team. visits to patients in hospital, or follow-up phone calls for those who have been discharged. Other discharge References planning activities include: Ministry of Health and Long-Term Care (MOHLTC) (2011). Enhancing the Continuum of Care: Report of the Avoidable Hospitalization Advisory Panel. • Newborn assessments in hospital along with the Toronto, ON: Baker, R. and the Avoidable Hospitalization Advisory Panel. arrangement of a three-day follow-up home visit; Health Quality Ontario (HQO). (2013a). Best Path: A support for health • Arrangement of follow-up home visits, in-office visits, links – Transitions of Care. Toronto, ON. and communication with home and community care Health Quality Ontario (HQO). (2013b). Quality Compass – Navigate organizations regarding service provision; from Knowledge to Action. Transitions. Retrieved from http://compassdev. hqontario.ca/language/en-us/home/subtopics/transitions/ • Internal referral to other MFHT programs and overviewcdec.html?topic=Transitions services; and Health Quality Ontario (HQO). (2016). Transitions Between Hospital and • Documentation of notes within the MFHT EMR to Home – Summary of Evidence-Informed Best Practices. Retrieved from http:// update the patient’s PCP. www.hqontario.ca/Portals/0/documents/qi/health-links/transition- summary-of-evidence-informed-practices-en.pdf Collecting data to determine whether the Transitions Kripalani, S. (2017). Clinical Summaries for hospitalised patients: time Program is having a positive impact on patient outcomes for higher standards. BMJ Qual Saf (26), 354-356. Table of Contents Redefining Health Care 23 ACADEMIC ARTICLE

Improving the Hospital Discharge: Focus on Sustainability

By: Andrew Appleton MD, MHSc, CHE, FRCPC Ontario’s Capacity Challenge

Care transitions are critical stages in a person’s health care journey. However, Further context for this article is the there is a body of evidence suggesting that patients are not receiving the significant volume demand on the communication or information they need at these critical transition points acute care system in Ontario. This (Eassey, McLachlan, Brien, Krass & Smith, 2017; Rustad, Furness, Cronfalk & will increase as the population ages Dysvik, 2016). This leads to poor patient experiences and the risk of suffering (CIHI, 2011). Emergency department adverse events, such as medication errors or disrupted continuity of care wait times, inpatient units operating above 100 per cent capacity, delayed (Auerbach et al., 2016; Rustad et al., 2016). This phenomenon has more to hospital discharges, and high do with sub-optimal discharge processes, than the well-intentioned providers readmission rates are all symptoms who execute them. of a strained system(CIHI, 2012). Fortunately, improvement research has shown a better way, one that The act of discharging a patient from focuses on communication and places patients at the centre of their care hospital is only one point along the (Jack et al., 2009; Sanchez, Douglass & Mancusso, 2015; Clancy, 2009). journey through acute care. However, Research has also been shifting to an approach informed by patients’ getting it right is crucial, helping to relieve pressure on the system, and experiences with respect to continuity of care (Auerbach et al., 2016). most importantly, to support better However, sustainable implementation is a challenge in the real world. patient experiences and outcomes. This article examines why programs that have successfully addressed As such, the discharge planning these gaps in care are challenging to replicate beyond the pilot phase, thereby process continues to be a focus of making widespread improvement an elusive goal. improvement efforts for health care providers.

The Difficulty in Replicating the By anticipating, evaluating and addressing Success of Project RED sustainability challenges at all stages of planning, The Project RED (Re-Engineered high-quality discharge process improvement can Discharge) study, which originated in the United States, proved that become a reality. patient education and open lines of communication during and after hospitalization are beneficial (Jack

24 April 2018 Table of Contents et al., 2009). The RED process Following the publication of Project RED, national included three strategies. First, the patient received education tailored quality standards in both the United States and to their reason for admission and comorbidities. Next, an after-hospital Canada have emphasized the discharge process as care plan was assembled. This an opportunity to improve quality of care. document included the reason for hospitalization, a list of discharge medications and instructions, contact information, and a list of follow-up Project RED. Several themes became that care delivery processes rely on plans. The plan was discussed with clear. First, organizations adapted the people in organizations to perform the patient on the day of discharge original protocol to better align with them. Hence, most of the barriers and a copy was sent to the primary their current processes in 9 out of 10 to successful implementation are care provider. Finally, a pharmacist cases. This diluted fidelity may have rooted in organizational priorities phoned the patient within four days of hampered the potential to realize the and culture. These barriers are not discharge to review medications and intended outcomes. Next, successful novel. They can be anticipated and the overall plan. implementation was associated with addressed proactively to foster the The results of the study are strong leadership and teamwork. best chance for success. The National compelling. Hospital utilization within This is not surprising, but also Health Service (NHS) Sustainability 30 days of discharge was reduced cannot be taken for granted. Finally, Model, developed in the U.K., by 30 per cent, patient satisfaction there were common challenges is a viable tool that can address improved, and an estimated $412 across organizations which included this challenge. USD per patient was saved (Jack et acquiring additional resources, al., 2009). It is important to highlight inflexible technology solutions, the Using a Model of Sustainability that this was a general medicine need for clinical champions, the to Support Uptake population with a large proportion perception of duplication of work, and of lower socioeconomic status adapting to a new culture. At the end The NHS Sustainability Model can be participants in inner-city Boston – a of the observation year, 7 out of 10 used during improvement efforts to challenging population in which hospitals had implemented a version assess and address implementation to elicit positive health outcomes. of RED. However, the outcomes challenges in the short and long term Following the publication of Project were modest compared to the (NHS, 2006; Doyle et al., 2013). The RED, national quality standards in original study (Jack et al., 2009). NHS model is a survey tool completed both the United States and Canada Clinical trials are strictly by the project team at multiple stages have emphasized the discharge controlled environments. Recreating of their work. For example, team process as an opportunity to improve their results in the real world is members would individually complete quality of care (AHRQ, 2013; HQO, nearly impossible. This is especially the survey at planning, piloting and 2013). Despite this policy direction, so when extrapolating the possible implementation checkpoints. The implementation of RED-like processes impact of study protocol to a aggregate results would be discussed have been limited and disappointing. population or environment that is by the team, with relevant course A follow-up study to Project different from the original. This corrections made thereafter. RED provides insight into the lack is illustrated by the difficulties The model assesses process, staff of uptake (Mitchell et al., 2016). described in the Project RED and organizational factors. Process Ten hospitals were observed for one follow-up study on implementation. factors address the real added value year while they sought to implement Compounding this phenomenon is of an intervention. These include

Table of Contents Redefining Health Care 25 ACADEMIC ARTICLE

Most of the barriers to successful implementation Conclusion are rooted in organizational priorities and culture. Beyond Project RED, there are other helpful resources, tailored to Ontario’s environment, to guide organizations on implementing better benefits beyond helping patients, these aspects of an implementation discharge practices. For example, the credibility of the evidence-base, effort support and enable the Patient-Oriented Discharge Summary and effectiveness of the system to sustainability of a given intervention (PODS) from University Health monitor progress. Attitudes toward such as Project RED. Unaddressed Network’s OpenLab is a streamlined, change, training needs, and the level weaknesses in any of the factors patient-centred document that frames of engagement from administrative increase the likelihood of wasted communication between hospital and clinical leaders make up the staff effort. Failed implementation, in providers and patients (Hahn- factors. Finally, organizational factors turn, bolsters people’s unwillingness Goldberg, Okrainec, Damba & Huynh, include strategic fit and whether to change, opting instead for the 2016). However, implementing a existing infrastructure is suitable to comfort of the status quo. simple solution like PODS requires support a new process. Together, concerted team effort, for the reasons

ST_MODEL_FEB03:Layout 1 3/2/10 10:06 Page 5 outlined above. Assembling the right

The NHS Sustainability Model (2006)

Monitoring progress

Training and involvement

Behaviours

Adaptability Staff Senior leaders

Credibility of benefits Process

Clinical leaders Benefits beyond helping patients Organisation

Infrastructure

Fit with goals and culture

26 April 2018 Table of Contents Sustainability 5 interdisciplinary team, including centre of their own care. To do so, patient representation, and applying discharges must involve the patient, Andrew Appleton practices General a framework for sustainability such allow open dialogue, and focus on the Internal Medicine at London Health as the NHS Sustainability Model information that matters to Sciences Centre. He is an Assistant throughout the improvement process, them. This not only improves the Professor at the Schulich School of will create the best possible chance patient experience, but also bolsters Medicine & Dentistry, and a research for success. efficiency and quality of care, while Fellow with the Institute for Clinical Patients deserve the best care that reducing cost (Jack et al., 2009; Evaluative Sciences. He has also can be offered, especially during times AHRQ, 2013; HQO, 2013). completed a Master’s of Health of transition. Realizing this demands Now is not the time for more Administration at the Institute of Health an imperative to continuously re- pilot projects, now is the time for Policy, Management and Evaluation at examine and improve processes. Each implementing sustainable, patient- the University of Toronto. His academic examination of the hospital discharge centred discharge practices to interests are in health policy, quality process provides an opportunity to improve patients’ experience across improvement, and transitions of care from firmly place the patient back at the care transitions. hospital to home.

References

Agency for Healthcare Research and Quality Doyle, C., Howe, C., Woodcock, T., Myron, Mitchell S.E., Martin J., Holmes S., van Deusen (AHRQ). (2013). Care Transitions From Hospital R., Phekoo, K., McNicholas, C., & Bell, D. Lukas, C., Cancino, R., Paasche-Orlow., & Jack, to Home: IDEAL Discharge Planning. Rockville, MD: (2013). Making change last: applying the NHS B. (2016). How Hospitals Reengineer Their AHRQ. institute for innovation and improvement Discharge Processes to Reduce Readmissions. sustainability model to healthcare J Healthc Qual. 38(2), 116-126. doi:10.1097/ Auerbach, A.D., Kripalani, S., Vasilevskis, improvement. Implement Sci. 8(1), 127. JHQ.0000000000000005 E.E., Sehgal, N., Lindequer, P.K., Metlay, doi:10.1186/1748-5908-8-127 J.P., & Schnipper, J.L. (2016). Preventability NHS Institute for Innovation and and Causes of Readmissions in a National Eassey D., McLachlan A.J., Brien J-A, Krass Improvement (NHS). (2006). Sustainability Cohort of General Medicine Patients. JAMA I. & Smith L. (2017). I have nine specialists. Model and Guide. London, England: NHS. Intern Med. 176(4), 484-493. doi:10.1001/ They need to swap notes! Australian patients’ Rustad, E.C., Furnes, B., Cronfalk, B.S. & jamainternmed.2015.7863. perspectives of medication-related problems Dysvik E. (2016). Older patients’ experiences following discharge from hospital. Health Canadian Institute for Health Information during care transition. Patient Prefer Adherence Expect. doi:10.1111/hex.12556. (CIHI).(2011). Health Care in Canada, 2011: a (10), 769-779. doi:10.2147/PPA.S97570 Focus on Seniors and Aging. Ottawa, Ont.: CIHI. Hahn-Goldberg, S., Okrainec, K., Damba, Sanchez, G.M., Douglass, M.A. & Mancuso, C. & Huynh T. (2016). Implementing patient Canadian Institute for Health Information M.A. (2015). Revisiting Project Re-Engineered oriented discharge summaries (PODS): A (CIHI).(2012). All-Cause Readmission to Acute Discharge (RED): The Impact of a Pharmacist multi-site pilot across early adopter hospitals. Care and Return to the Emergency Department. Telephone Intervention on Hospital Healthc Q. Ottawa, Ont.: CIHI. Readmission Rates. Pharmacotherapy 35(9), 805- Health Quality Ontario (HQO). (2013). 812. doi:10.1002/phar.1630 Clancy, C.M. (2009). Reengineering Hospital Evidence Informed Improvement Package: Discharge: A Protocol to Improve Patient Transitions of Care. Toronto, ON: Queen’s Safety, Reduce Costs, and Boost Patient Printer for Ontario. Satisfaction. American Journal of Medical Quality 24(4), 344-346. doi:10.1177/1062860609338131 Jack, B.W., Chetty, V.K., Anthony, D., Greenwald, J.L., Sanches, G.M., Johnson, A.E., & Culpepper, L. (2009). A reengineered hospital discharge program to decrease rehospitalization: a randomized trial. Ann Intern Med. 150(3), 178-187.

Table of Contents Redefining Health Care 27 FEATURE

Can PROMs Transcend Transitions?

Using Patient-Reported Outcome Measures to Improve Care Transitions for Patients and Families

By: Emily Myers and Anthony Jonker

28 April 2018 Table of Contents Although standardized use of PROMs across many conditions and treatments is not yet part of current practice in Ontario, the swell of international interest is moving the discussion to expand systematic use of PROMs to new clinical areas.

Although valuable in promoting a on clinical outcome data only, patient-centred view, PROMs have may miss the patient perspective atient-reported not typically been implemented completely. The PROs derived from outcome measurement to communicate outcomes across PROMs tools have the potential to be (PROM) is an transitions in care. There may be an important measure of success for increasingly discussed benefits if future PROMs could be clinical providers and hospitals and field of study that by adopted to equip a wider set of health provide an additional, highly patient- Pits nature incorporates a patient- care providers with each patient’s oriented measure against which to centred approach to improving care perspective about their health status improve care. , health-related quality of life, and at various points in time as they Generic PROMs are utilized at an health outcomes. Patient reported transition across the continuum of aggregate level in several Canadian outcomes (PROs) are evaluations care. Providers and care teams could provinces. PROMs for specific made directly by patients about use this information to create holistic conditions, such as hip and knee their health symptoms, level of care plans that reflect health status replacements, are also administered functioning, and satisfaction with and quality of life from the patient’s in Ontario by some providers, as well treatment, while PROMs are the perspective. as some other Canadian provinces, tools, usually questionnaires or including Manitoba, British Columbia, surveys, used to provide an objective Alberta, Saskatchewan and Quebec. method for soliciting a patient’s PROMs are administered in Ontario individual responses. PROMs What are PROMs and at a standardized, system level for provide a unique opportunity to cancer care. Cancer Care Ontario broaden providers’ views of their why are they important? (CCO) has been collecting data from patients by offering information PROMs since 2007 and holds one about how patients view their care PROMs assess aspects of a patient’s of the largest symptom databases in outcomes and their health status. health status related to their quality of the world, with 30,000 new PROs life, including symptoms, functionality collected every month. Access to and physical, mental and social this cancer PROMs data has enabled health (CIHI, 2015). PROMs aim to clinicians to look beyond disease capture the patient’s perspective of or treatment outcomes to a more their individual response to health holistic approach, enabling clinicians interventions and treatments. Relying

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through a particular clinical specialty Box 1 lens (the patient’s wound or failing joint, etc.), rather than holistically. PROs vs. PROMs vs. PREMs PROMs tools present an opportunity to widen the lens with which providers Patient Reported Outcomes (PROs) provide reports from patients about their own see their patients by encouraging health, quality of life, or functional status associated with the health care or treatment they awareness of how the individual sees have received. their core outcomes or functional health status. If PROMs are adopted Patient Reported Outcome Measures (PROMs) are tools and/or instruments used to in a way that bridges transitions, each report PROs. provider would have a perspective of Patient Reported Experience Measures (PREMs) are tools used to measure and report the patient’s outcome across other patients’ experiences during the care process. providers and over time, enabling clinical conversations that reflect the Source: (Weldring & Smith, 2013) whole patient. There are a number of considerations with respect to to improve quality of clinical care as discussions with patients about their implementing PROMs in this way: well as address quality of life from the care and care decisions (Ayers, Zheng, patient’s perspective (CCO, 2016). & Franklin, 2013). 1. Standardize PROMs tools Although standardized use of The first requirement is a PROMs across many conditions standardized set of questions and treatments is not yet part of to ask patients (a PROMs tool). current practice in Ontario, the How can PROMs drive This is important for a number swell of international interest is of reasons. First, it creates a moving the discussion to expand patient-centred care common language of PROs systematic use of PROMs to new across transitions? across providers, supplying clinical areas. Health care leaders informational continuity and across the world are recognizing Designing PROMs for implementation thereby encouraging consistent the value of PROMs. In the United across transitions at the outset, unlike conversations with patients across Kingdom (U.K.), the collection of the traditionally siloed approach that care setting. PROs is mandatory for some groups was developed with PREMs (see Box Second, it enables intra of surgical patients (Weldring & 1 for the definition), enables them and inter-organizational Smith, 2013). Another example is in to be a useful tool not just for local, benchmarking, which, in the United States (U.S.), where PROs site-specific quality improvement turn, can help identify where have been collected for orthopedics initiatives, but for augmenting clinical to look for organizational or for a number of years. In 2007, the conversations and quality of care systemic quality improvement UMass Memorial Arthritis and Joint across the full patient journey. opportunities. Furthermore, use Replacement Center implemented One of the key challenges for of a standardized tool enables a system designed to combine PROs patients in transition, particularly trending about how a patient data and clinical data within the those with complex conditions, is that fares over time. Additionally, patient health record, informing each new provider can too often see and of significant relevance to the patient as a point in time (the a patient-centred approach, patient as I am seeing them today) or is that a standardized set of

30 April 2018 Table of Contents questions across care settings patient populations will these differing purposes, we reduces the burden on patients sometimes be in tension with the can find a PROMs strategy that responding to a PROM tool on ability to widely compare and leverages a ubiquitous, generic multiple occasions by creating benchmark. In some instances, PROMs tool that would function a predictable, consistent (and PROMs have been developed for well across care settings. preferably simple) process of very specific patient populations, The International participation. asking questions that are highly Consortium for Health Outcomes The good news is that a relevant to outcome and quality of Measurement (ICHOM) brings variety of well-designed, generic life indicators typically associated together international patient PROMs surveys currently exist. with that condition. Some leaders representatives, clinician Examples include the Veterans in PROMs have attempted to leaders, and registry leaders to RAND 12-item Health Survey (VR- work around this challenge by develop standard sets of clinical, 12), the PROMIS Global 10 and the implementing generic PROMS, administrative, and PROs they EuroQol 5-dimension questionnaire supplemented with condition- recommend all providers track (ED-5D). It should be noted specific questions. This hybrid where applicable. Through that that the benefits of customizing approach provides some work, ICHOM has developed PROMs for condition-specific confidence that, notwithstanding recommended standard sets

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of condition specific measures in clinical settings across various and condition-specific PROMs (e.g., dementia, pregnancy points along the patient journey. available in this way could help and childbirth, hip and knee Implementation includes equip clinicians with a more osteoarthritis, etc.) that also both the administration of the holistic view of patients and, leverage generic/global tools PROM (obtaining the patient’s perhaps, the creation of even (ICHOM, 2017). Nevertheless, response), but also the availability more patient-sensitive care plans. there is a lack of consensus of the results for discussion around one generic tool and even between provider and patient 3. Designate administrative ICHOM leverages a few different during visits. Ideally, presentation accountability generic tools, depending on the of results would include those While it would be ideal to condition. Within Ontario (if not from previous responses, allowing collect and report results of a beyond), it would be beneficial for a longitudinal view. standardized PROM across care to utilize a common generic tool Such implementation of settings, achieving this comes where possible, supplemented PROMs to measure the full “cycle with significant challenges. with condition-specific PROMs as of care” for a particular condition One of these challenges is needed, thereby increasing the is by no means a new idea and designating administrative amount of standardized PROs has been shown to be successful responsibility and accountability being incorporated into the (Porter, 2014). The nuance in for its implementation. Sustained patient record. what we are proposing is the practice may be easier to achieve application of PROMs across if a lead organization could be 2. Enable use across the patient transitions and the inclusion of identified (perhaps for each journey results connected to providers and clinical condition) to have Ultimately, adopting a events across other care settings responsibility for the collection standardized PROM is a precursor and over time. We believe that and sharing of PROs throughout to its consistent implementation making the results of generic the entire patient journey, as CCO is doing for cancer care. This single organization would oversee the accountability structures Similar to other system challenges and organizational cultures that promote participation and faced in health care, having a shared sustainability. Ideally, it would also electronic health record in place would manage the value proposition for collecting PROs, considering be a significant enabler for solutions benefits in light of effort and administrative costs. and its ongoing development is an Our system in Ontario is not currently organized in such a inherent challenge of this approach. way as to support this approach widely. Due to the administrative accountability challenges, the best available opportunities to apply PROMs across transitions may be through an integrated, bundled care model such as those being piloted in Ontario.

32 April 2018 Table of Contents Such single organization-led, the province. Approximately continuity of care initiatives may 30,000 patients are screened every Emily Myers is Program Lead, Patient be what is required to ensure month through ISAAC in Ontario Reported Performance Measurement and consistent and objective survey (CCO, 2016) and these results Anthony Jonker is Director, Innovation practices through the ongoing form a regular part of discussions and Data Analytics for the Ontario collection of PROs (pre-, post- and between clinicians and patients Hospital Association. in-between clinical encounters) in Ontario’s cancer centers. and display results within the Finding a way to learn from this References shared record of the clinical approach may help to bring the Ayers, D.C., Zheng, H., & Franklin, P.D. care team. For example, surgical value of PROMs into more clinical (2013). Integrating Patient-reported Outcomes patients within an integrated care conversations. into Orthopaedic Clinical Practice: Proof of model where PROM results are Concept from FORCE-TJR. Retrieved from available, tracked and measured https://www.ncbi.nlm.nih.gov/pmc/ not just at the surgeon’s office but articles/PMC3792269/ also with the primary care and Conclusion Canadian Institute for Health Information rehabilitation teams. (CIHI). (2015) Patient Reported Outcome Measures. Retrieved from https://www.cihi.

Piloting provincial, standardized ca/en/patient-reported-outcome-measures 4. Disseminating the patient’s voice PROMs tools through an integrated Cancer Care Ontario (CCO). (2016). Finally, success will require care model may provide an Patient-Reported Outcomes and Symptom reporting PROs so they can be opportunity to introduce and test Management Program STRATEGIC available for discussion across the use of PROs specifically designed FRAMEWORK 2016-2019. Retrieved care settings. Similar to other to follow patients across transitions. from https://archive.cancercare. system challenges faced in health Regardless of the method chosen, as on.ca/common/pages/UserFile. aspx?fileId=362796 care, having a shared electronic interest in PROMs grows, it will be health record in place would be useful to think about how to design Cancer Care Ontario (CCO). (2013). How does Cancer Care Ontario help? Retrieved a significant enabler for solutions their adoption to ensure maximum from https://www.cancercare.on.ca/pcs/ and its ongoing development benefit to patients and how they can treatment/sympmgmt/ is an inherent challenge of this reinforce consideration of the patient International Consortium for Health approach. Again, piloting such a perspective not only at each visit, Outcomes Measurement (ICHOM). (2017). strategy as part of an integrated but also across transitions and The Global Standard. Retrieved from http:// bundled care program, within care settings. www.ichom.org/the-global-standard/ which a shared record exists, may We have imagined what these next Porter, M.E. (2014). Outcome measurement. be a good place to start. steps would be, including selecting a Retrieved from http://www.hbs.edu/ CCO’s Interactive Symptom standardized PROMs tool(s), enabling faculty/Publication%20Files/Website_ Outcomes%20Measurement_737ae94d- Assessment and Collection PROMs use across the patient f1b3-48ed-a789-025766d63670.pdf (ISAAC) system, which lets journey, designating administrative Weldring, T. & Smith, S.M.S. (2013). Patient- patients and their caregivers accountability and disseminating the Reported Outcomes (PROs) and Patient-Reported assess and track their symptoms patient voice. Though a challenging Outcome Measures (PROMs). Retrieved from online, is a provincial leader proposition, it begins with an Health Services Insights, PubMed Central when it comes to including PROs agreement that listening to patient (PMC) https://www.ncbi.nlm.nih.gov/ within the patient’s health record. perceptions of their own outcomes pmc/articles/PMC4089835 CCO enables PROMs collection and sharing those results across for cancer patients at kiosks in transitions should have a positive 14 regional cancer centres and impact on care. 78 partner hospitals throughout

Table of Contents Redefining Health Care 33 1. Can you describe an experience when you Through the Eyes transitioned from one health care setting to of Patients and another? Over the course of my daughter’s life, we experienced Caregivers: many care transitions: ICU to inpatient, hospital to home, hospital to home care, and hospital to hospital. In some Julie Drury instances, these transitions went well, while in others, they did not. Where transitions did not go well, the main Redefining Health Care spoke to issue was lack of communication between the health care a number of former patients and providers, health care teams, and health care facilities. caregivers to ask for their view Our family found that there was significant communication before and during admission (for the most about care transitions. part), particularly if the admission was planned (e.g., a surgery or procedure). However, there appeared to be a Julie is the inaugural Chair of the Minister of Health lack of communication and policy/mechanisms to ensure and Long-Term Care’s Patient and Family Advisory appropriate communication after a procedure, particularly Council (PFAC). Based on her personal and if complications occurred. professional experience, she was appointed to help Reflecting on one particular experience, we had advise government on key health care priorities that a scheduled procedure for a surgery at one hospital impact patient care and patient experiences in Ontario. that had been carefully planned with our primary care While managing her daughter’s complex medical team at our ‘home’ hospital because of our daughter’s needs, Julie has mentored other families facing similar complexity. Following discharge, we learned that our challenges, and helped them navigate the health care child’s primary care team was not even made aware she’d system. She has worked as a senior policy advisor and been discharged home. Though our child appeared stable director with Health Canada, is a board director of enough for discharge, she had a medical event on the drive MitoCanada Foundation, and has also been a family home. We immediately took her to our ‘home’ hospital’s advisor with a number of organizations. primary care team, who had no information about her procedure, her recovery, or her discharge. In retrospect, had our child’s primary team been involved in discharge planning (as they had been in planning the procedure), she would likely not have been discharged from hospital that soon, and the team would have been better prepared to support her during a medical event.

34 April 2018 Table of Contents 2. Can you reflect on how your transition The entire journey was a significant learning curve for us, impacted you and/or your caregiver? and we feel this should not be the case for patients and their families. Unfortunately in many of our 3. What could have been done differently to experiences, information sharing was make the experience better for you? extremely poor and often left to the parents to coordinate and facilitate. Every child/patient, particularly those who are known to be more medically Over 90 per cent of the time, information sharing between complex, should have a well-organized different settings occurred because we facilitated it as discharge plan that includes input from parents. This was extremely stressful and put an incredible and unfair burden on myself as the primary caregiver for the parents/family before discharge or our daughter. a transition in care is made. Care between settings was not linked and not holistic. Information sharing was very difficult and occurred either late or on an ad hoc basis. Discharge notes would arrive In my opinion, this would include the following: late (e.g., two to three days post discharge) and provide • A discharge planning meeting that includes the key little useful information. There were no emails, phone health care providers and patient and family involved calls, or discussions where questions could be asked or in the case, held one to two days before discharge. answered. This only occurred in ‘crisis’ situations and not This meeting would review both the plan and patient/ proactively as part of good practice. family needs/preferences and address any questions or We were often told one thing, while another actually concerns. occurred. There was an appearance of engagement, • A discharge note that is reviewed with the patient and but often, health care providers were absent from care family first and sent to the health care team on the transition conversations, there were constraints around day of discharge (with a copy given to the patient and Monday–Friday/9 a.m. – 5 p.m. ability to support family). This should include important and relevant transitions, and health care providers did not follow up on details determined in consultation with the patient/ commitments made about care needs or preferences in family (e.g., changes in medication, medication plan, transition planning (e.g., directly relaying information to our wound care/management, emergency/crisis plan and primary care team). contact etc.). Because we are a highly engaged family who advocated strongly for our child, we made a significant effort to be involved in planning transitions. We also learned over the years what this should look like and what needed to happen to ensure proper care transitions.

Table of Contents Redefining Health Care 35 FEATURE

Merging Organizations To Improve Continuity of Care for Complex Populations

36 April 2018 Table of Contents “For Sinai Health, the journey has been one that is deliberate and carefully planned. I view the date of the amalgamation [January 2015] as day one of the transformation that is still ongoing.” – Dr. Gary Newton, President & CEO, Sinai Health System

According to Jane Merkley, both Bridgepoint and Sinai had already Implementing the he Ontario Hospital served among the most complex Association (OHA) patients in the province pre-merger, Change interviewed Sinai and had a history of working together Health System’s to improve care for their patients. Dr. Newton, who became President President and “We recognized early on that we and CEO in 2016 after serving TCEO, Dr. Gary Newton, and Jane both excelled in our respective areas as Chief Medical Strategy Officer Merkley, Executive Vice President, of care, but together, we could do so and Physician-in-Chief when Sinai Chief Nursing Executive and Chief much more for our patients,” said Health System was first formed, Operating Officer, to learn more Merkley. “The data shows that the considers the day the merger was about how the amalgamation vulnerability for complex patients announced as the first day on Sinai between Mount Sinai Hospital is often in the transition periods Health’s transformational journey: (Sinai) and Bridgepoint Active between care settings, and we needed “Transformation is not organic Healthcare (Bridgepoint) helped to get better at addressing the entire or immediate; it’s a deliberate, to improve the patient experience continuum of care for patients.” If meticulously planned and well- across transitions. they could improve continuity of care, managed process.” In 2015, Sinai and Bridgepoint they could improve patient outcomes According to Merkley, a key came together to form Sinai Health and patient and caregiver experiences. ingredient that supported this System (Sinai Health). Joining It soon became clear that Sinai, transformation was the establishment as an affiliate was Circle of Care, Bridgepoint and Circle of Care shared of an Office of Transformation and a provider of home care and a unique opportunity to work under a Integration and the appointment of a community support services. Before single, compelling vision: “…creating Chief Transformation Officer, which the amalgamation, Bridgepoint was a leading integrated health system for helped to ensure purposeful change. an independent 464-bed hospital people with complex health needs”. To date, this multi-year process and research facility dedicated to Having a research mandate is supported by research to ensure serving patients living with complex through the Lunenfeld-Tanenbaum that evidence is guiding decision- conditions and those in need of Research Institute was also integral to making; by updating existing rehabilitative care, and Sinai was a exploring new, innovative models of structures to emphasize system- 442-bed acute care academic health care and reinforcing Sinai Health’s wide leadership and establish sciences centre. commitment to innovation. organization-wide committees; and change management, through

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extensive, ongoing communications the new vision. Merkley explained with staff, physicians, patients and that the approach taken by Sinai What is EBCD? the community and a re-branding Health was to initially zero-in on strategy. key populations, and they identified Experience-based co-design (EBCD) “When you think that you’ve orthopaedics as an area where is an approach that enables staff communicated the idea enough, immediate gains could be made. The and patients (or other service users) communicate it more. You can’t main question guiding the project in to co-design services and/or care over-communicate a transformational orthopaedics was: “How can we create an pathways, together in partnership. The agenda. We had the advantage of integrated system for patients with complex approach is different to other service having a very appealing agenda, and orthopaedic conditions – such as those with improvement techniques. EBCD the positive feedback and genuine hip fractures and joint revisions?” involves gathering experiences from excitement that we received when Experience-based co-design patients and staff through in-depth we talk about our vision to the staff (EBCD) was regarded as the best interviewing, observations and group is incredible,” said Dr. Newton. “Our strategy for answering this question, discussions, identifying key ‘touch town halls, for example, are standing as it enables input from staff, patients points’ (emotionally significant points) room only.” and their families. and assigning positive or negative Quality Aims were also established Input from patients and families feelings. to drive leading practices. Targets set proved to be invaluable; for example, for patient- and family-centred care they shared that they felt anxious A good resource on the approach is included: to be a top 10 per cent about moving to Bridgepoint – The Point of Care Foundation based in performer in patient experience for they wanted to know about the the U.K. continuity of care and transitions, environment and what to expect – and and for informed care; to be a top 10 also expressed difficulties with pain per cent performer in overall patient management during transitions. In Merkley was pleased to share that experience; and to ensure that 80 per response, Sinai Health developed the efforts paid off: cent of all corporate quality initiatives videos and brochures to orient • Patients’ pain scores at the time engage patients and families. patients and families to the new of transition and in rehabilitation environment, and implemented decreased. pain management interventions that • Patient experience scores would ease the care transition from improved, especially in the Developing New Models one care setting to the next. As well, “continuity of care” domain as of Care to address transportation challenges measured by the Canadian Patient raised by patients, two vans were made Experience Survey-Inpatient Care. available through Circle of Care to • Members of the health care team Patients were the core focus of this transport patients between sites for communicated more effectively transformation, more specifically, the required six-week specialist follow- with one another. improving continuity of care under up appointments. • Patients no longer had to wait for access to specialists and early diagnostics. They could now “Transformation is not organic or get the care they needed in a timely manner, and avoid being immediate; it’s a deliberate, meticulously transferred from one organization planned and well-managed process.” to another unnecessarily. • Quality-Based Procedure (QBP) standards and targeted 38 April 2018 Table of Contents performance goals were met, and Dr. Russell Goldman, Director in some cases, surpassed, such of Sinai Health’s Inter-Departmental Parting Thoughts as time to surgery and expected Division of Palliative Care, is length of stay in hospital. For developing a system-wide approach When reflecting on the 2015 merger, example, the new orthopaedic to transforming the palliative Dr. Newton recognizes that while care pathway was able to: care model, from primary care to the new organization presents an – reduce length of stay by 6.3 hospital care, to home care. Now, exceptional opportunity to provide days, palliative care physicians at Sinai more integrated care for patients, can admit patients directly from it still only captures a portion of – decrease time to surgery by 16 home to inpatient palliative care in an individual’s entire care journey, hours, cases where patients who were being which begins far before admission – increase the time of initiation cared for at home had a sudden and encompasses more than just the of appropriate osteoporosis change in their condition. Patients hospitalization of a patient. treatment by 40 per cent, and no longer have to go through the “We are only a part of the solution – decrease cost per case by emergency department to access in achieving more seamless care almost $5,000. inpatient palliative care. They can be across our health care system. There transferred directly from home to a Merkley also noted that the is a lot of impressive work being done palliative care team who can provide success of the new orthopaedic in the province, and I believe we are them with the most appropriate and integrated care pathway can be an important partner in encouraging compassionate care. attributed to the close collaboration health care providers to work together The patient- and family-centred with patients, families and staff during to create a new system, one comprised care approach has also cascaded to the design. She added that staff of connections that make healing a other valuable initiatives that can continue to receive training on EBCD continuous journey,” Newton said. support these critical transitions as a way to foster patient- and family- Merkley believes that while for patients. According to Merkley, centred care when developing new, structural change can help to spur Sinai Health, Woodgreen and The integrated care models. better integration across traditional Change Foundation are currently Sinai Health has also begun health care silos, the real work is collaborating to look at strategies for working on two other care pathways, in harnessing the desire for health supporting family caregivers so that palliative care and medically complex care providers to lead and institute they can help facilitate transitions patients/complex medicine. change, by inspiring them with a for complex patients and enhance According to Dr. Newton, high- moving vision, giving them the right continuity of care. As part of these quality end-of-life care had already tools, and ensuring that patients and efforts, a new centre for family been offered in Bridgepoint’s 32- families are engaged in the process caregivers is being planned to provide bed Albert & Tammy Latner Family of transformation. “We’ve learned a forum for caregivers to connect with Palliative Care Unit, Sinai’s inpatient so much since we amalgamated, one another and health care providers units, patients’ homes through the including that patient and family in order to obtain the supports they Tammy Latner Centre for Palliative engagement is not just a nice to have, need. Care, and through Circle of Care’s but that it’s essential. And we are With continuity of care top-of- large ambulatory and community/ really seeing results in patient care, mind, Sinai Health is broadening home-based program. Sinai Health which is really what it’s all about.” its partnerships with long-term care recognized the need to harness homes and retirement facilities. They these extraordinary individual The inter-professional approach for hip fracture are also exploring opportunities to patients developed at Mount Sinai was featured programs to establish an integrated, work with other health care providers in a study published in the Journal of Orthopedic comprehensive clinical and academic to build capacity in primary care. Trauma. Dr. Christine Soong, Hospitalist, led the program that focuses on innovative quality improvement initiative and study. models of care. Table of Contents Redefining Health Care 39 1. Can you describe an experience when you Through the Eyes transitioned from one health care setting to of Patients and another? Transitions occur on a daily basis in all areas of life, and not Caregivers: just in health care. This process can frequently pose as a time of uncertainty. Our advancements in medicine and Crystal Chin technology have allowed all of us to live longer, including individuals with congenital conditions and medical Redefining Health Care spoke to complexities, as well as individuals with chronic conditions a number of former patients and who acquire other illnesses through the aging process. It caregivers to ask for their view is not enough to prepare youth and their families for these transitions along with a scattered number of sub-specialists about care transitions. and a few clinics throughout the country. It is essential to incorporate fundamental knowledge of childhood-onset Crystal was diagnosed with a neuromotor condition conditions to equip current and future adult care providers at eight months. She moved to Canada from Taiwan throughout the health care system in understanding the in her late childhood and received care in paediatric needs of this population in order to plan and best assist hospitals until she transitioned to adult care. Crystal has the families and young adults who will inevitably graduate made significant contributions to improving health care and transition into their professional practice. Yet, from my delivery by ensuring that the patient voice is experience, there seems to be a lack of holistic integration heard. She has worked with organizations, such as in the adult system, which saddles the patient with all the Holland Bloorview Kids Rehabilitation Hospital, responsibilities of sorting out logistics and coordinating and Health Quality Ontario, The Change Foundation and communicating between specialists, to ensure that things Patients Canada. occur in a logical manner. When I transitioned from paediatric to adult care, the number of providers tripled even though my health had not changed. At the same time, there was a decrease in home care support due to the assumption that I was now an adult, and that I would be more independent with my physical needs. However, the management of my care alone can sometimes feel like the equivalent of a full-time job. Finally, transitioning with a congenital condition that can have multiple comorbidities, requiring numerous specialists, can be stressful. This is especially the case when coming from a wide-ranging, better integrated system of care which the person has likely known since childhood, to a compartmentalized and more fragmented one. Such an important transition can affect an individual’s mental health

40 April 2018 Table of Contents and overall wellness. I found that the adult system is quite of patients should be considered regardless of age, ability, limited in addressing this aspect of care for young adults. gender or any other quality, rather than being based on Good continuity of care is a crucial way to ensure the assumption of providers. In the paediatric system, there that individuals can maintain their participation in their was such an emphasis on care providers talking to children community and remain active citizens in society. One way and involving them in care planning to prepare them for to support this is by having and implementing well-rounded adolescence and adulthood. It seems rather ironic that policies developed using qualitative and quantitative adult care is the reverse. research that explore different stages throughout life. This data would inform and enrich our understanding, 3. What could have been done differently to and hopefully result in a more inclusive infrastructure. make the experience better for you? Respecting the capacity and autonomy of the person and/ or their system of support, engaging in dialogue regarding At times, the abstract and grandiose goal of “making a the goals of the individual, developing a basic appreciation difference” comes down to simple things, such as: making that what may have worked well in the past may no longer an attempt to ensure that patients don’t feel rushed during be feasible, and being cognizant of social determinants the assessment/evaluation of care, fostering mutual of health, may all be factors in care planning. We must be respect, and attempting to appreciate the other transparent in regards to our resources and limitations as person’s perspective. These simple gestures can have a health care system, and align these elements with the a lasting impact. preferences and priorities of the patient and their support The concepts of Quality Improvement and Evidence- system through honest discussion and negotiation. Informed/Based Medicine are not simply a matter of gathering data or developing a checklist. They can also 2. Can you reflect on how your transition be seen as an iterative process with opportunities for impacted you and/or your caregiver? dialogue, for example, by utilizing the elements within the quality improvement framework: patient-centered care, It is second nature for people to judge a book by its cover. equity, efficiency, effectiveness, timeliness, and safety. The It is critical to remember that physicians and other health components within evidence-informed medicine include care providers are also human, who, when faced with analyzing, translating and applying the evidence when time and resource pressures, may end up leaning on developing, and disseminating clinical competencies and stereotypes and biases when dealing with patients, rather embedding these with the desires and preferences of than what they know or by getting acquainted with their the patient and their support system. We must be acutely patients. Through these human, habitual biases, I have aware of the constantly evolving needs of our communities. experienced ageism and ableism where clinicians may While wellness may be defined by the absence of illness have felt that I lacked the intellectual capacity to appreciate in acute and episodic settings, for congenital and chronic the state of my health and my treatment options. I have conditions, wellness is more of a fluid concept, with an also been spoken down to and even frequently asked why extending spectrum and ever-diversifying trajectory. my mother was not present in clinical settings. Health My hope is that even as we are continuously in pursuit of care providers have also made assumptions about my clinical excellence and innovation, we must also maintain physical capabilities because I use a wheelchair as my main our passion for compassionate, patient- and family- method of mobility. My point is that the individual needs centered care in nurturing the art of medicine.

Table of Contents Redefining Health Care 41 FEATURE

Mining Unstructured Data to Improve Health Care Transitions

By: Neil Seeman

42 April 2018 Table of Contents Is there evidence that mining this vast array of unstructured data can positively influence health care? The short answer is “yes”.

health and health system concerns. health care quality, however, poses In this paper, I propose leveraging three challenges. the use of unstructured data to better The first challenge is that the understand patients’ and caregivers’ data exists in free-form text or, In Ontario and across experiences with transitions in care. at best, semi-structured clinical Canada, rich sources of These unstructured data share documentation, dispersed among health information remain three characteristics: volume (they different providers, and in different largely untapped. I am are plentiful), velocity (they become social media. They are, thus, difficult referring to unstructured available quickly but may also to standardize, analyze, and aggregate. Idata, which I define as health disappear quickly), and variety (they The second challenge is to glean information derived from non- exist in many forms). They often lack worthwhile insights from this mass of research-based digitized sources. a fourth “v,” which is veracity – in texts even when it is organized, insight Examples include: written text other words, they are not necessarily that can improve the quality of care, in electronic health records, accurate or ‘evidence-based’ and, specifically, transitions of care. pharmaceutical prescription data, (Martin-Sanchez & Verspoor, 2014; In this article, I offer a path open text survey data, Facebook Normandeau, 2013). While validity forward toward solving these two entries, Twitter feeds, blogs, web may therefore be in doubt, these challenges. I suggest that we bring pages, online discussion forums and data unquestionably complement the the Ontario health care start-up and other similar sources of open source more traditional sources of health institutional communities together to data that can provide insight into information and patient experience ‘hack our way forward’, as I explain the health of Canadians and their (e.g., results of clinical trials, case in the conclusion. This requires subjective experience of the quality reports, focus group or paper-based overcoming the third challenge, of our health care system. patient experience data). which is to ensure privacy (Kum & Some of these data are entries by All the traditional methods Ahalt, 2013). We are talking about clinicians or administrators; others, of gathering information reach data that should enjoy the same the most valuable perhaps, are their conclusions by studying legislated privacy protections as written in the patient’s own voice. relatively limited numbers of do, for example, patient health Online social networks have become patients so that generalizability to records. Unstructured data are often popular platforms for people to a larger range of potential patients tagged with personal identifiers, and interact with each other and discuss remains questionable. As the world therefore, are fraught with privacy any number of topics, including dramatically shifts from paper to challenges. This is a thorny problem electronic formats, digital data and constitutes one of the critical offer a much larger evidence base. barriers to the full use of these rich Leveraging such data to improve data sources.

Table of Contents Redefining Health Care 43 FEATURE

As evident in this example, paediatric/adult/geriatric frontiers. Return-on-Investment? security and privacy risks need to These all constitute periods of stress be addressed: even if the data are and unmet need often expressively Show Me the Evidence anonymized and are not traceable to voiced in Facebook entries or in individuals, there should be no way personal blogs that, once organized Is there evidence that mining this for anyone to be able to know whether and analyzed, and safely (i.e., personal vast array of unstructured data can particular, identifiable sub-populations identity removed) disseminated, have positively influence health care? The in a community are disproportionately the potential to provide valuable short answer is “yes”. at risk for HIV. It is critical to prevent information that might help to One example is epidemic bringing attention, stigma, and improve the experience of patients as surveillance. In 2012, Young and discrimination to a population already they transition across the continuum colleagues collected more than half at risk. of care. a billion tweets and found almost In my view, transitions in Figuring out how to best leverage 10,000 that mentioned sexual care are places where the use of unstructured data for any return- behaviours and drug use which are unstructured data can be especially on-investment is neither a human risk factors for HIV infection. By useful, especially since very few tools resource challenge nor a technology placing the geographic origin of exist that comprehensively measure challenge, but a strategic one. these tweets onto a map of the world, patient experience across transitions. Essentially, the issue boils down to potential hot spots for HIV could be Despite this, transitions are crucial improving the quality and subjective discerned, showing how social media points in health care delivery which experience of transitions in health can be used to monitor the spread can impact patient outcomes and the care within Ontario while preserving of infectious disease (Young, Rivers quality of care provided. Transitions the privacy of patient data and & Lewis, 2014). In the same vein, are difficult for patients no matter guaranteeing their secure storage. geographic comparisons can be made what their illness – first, the transition to assess within which regions patients from well to ill, then the various experience transitions across the stages of navigating the health system: continuum of care that are coherent accessing help, waiting for referrals, Meeting the First and linked, or experiences of overt or admission to hospital, discharge to subtle discrimination during home or to a rehabilitation service, Challenge: Finding the such transitions. home care, or transitioning across the Relevant Data

Since unstructured data exist in so many different forms, the first Figuring out how to best leverage challenge is to find in a very large haystack the needles of data that are unstructured data for any return-on- germane to improving transitions in investment is neither a human resource health care. This first step involves drawing on expert stakeholders’ challenge nor a technology challenge, input to define more precisely what the problem is we are trying to solve. but a strategic one. Are we trying to better understand the experience of transitions of care from the perspective of the patient? Are we trying to fill the gap of unmet needs of patients, families, providers,

44 April 2018 Table of Contents or all of these groups? Are we trying geographic region. We can ensure extract relevant transition themes to minimize costs, to reduce lawsuits? privacy by excluding identifying (such as communication across Is our aim to ensure that patients remarks and aggregating the data. settings and among disciplines and families continue to be treated We can then dig deeper to discover and specialties, family input into with respect and with skill during if the preferred provider group decisions, cross site co-ordination, care transitions? Is this an attempt at shares critical characteristics. Have the inter-disciplinary nature of care, quality improvement? they adopted a particular model of access to required medications in Depending on the answers to care that focuses on improving care an uninterrupted way, availability these questions, different forms of transitions? Were they trained under of appropriate transport between unstructured text can be targeted. For the same clinical mentors? What other settings, anticipation of needs over example, improving the experience factors distinguish them? the evolution of an illness, the efficacy of transitions may involve the use of Relevance to a chosen topic of interoperable electronic health open text narratives on Twitter to should involve an expert panel records, maintenance of a safety assess the degree to which patients consisting not only of patients, net throughout life, or education in or caregivers express increasing or caregivers and providers, but also patient self-management). decreasing frustration online about of information technologists who This has not yet been done access points, or parking lot capacity, can provide guidance as to methods specifically to search for subjective wheelchair availability, or failures by of extraction by searching for key experiences across care transitions, care providers to transmit important words, creating a coding scheme, but it has been done to better clinical information. systematically applying the codes to understand reactions to the general Alternatively, if the goal of the selected documents, testing for category to which transitions the initiative, as defined by expert inter-coder reliability, counting the belong, the category of unexpected stakeholders, is to identify the best numbers of codes for each document, stressful events (Gaspar, Pedro, practices of those most skilled at and analyzing the counts by a variety Panagistopoulos & Seibt, 2016). transitions of care, we may wish to of statistical methods (Bernard, 2012). Traditionally, care transitions engage in natural language processing Natural language processing have been studied through personal of open text comments and online (NLP), which means using heavy interviews or focus groups, mainly reports that refer to a range of computing power to make sense of of professionals (Davis, Devoe, providers and link the most publicly the semantic or representational Kansagara, Nicolaidis & Englander, favored among them to clusters of meanings hidden in extraordinarily 2012; Gott, Ingleton, Bennett & health care facilities in a certain large data sets, is then able to Gardines, 2011; Greysen et al., 2014),

Table of Contents Redefining Health Care 45 FEATURE

although patient voices have also notably Google, whose leadership in for data integration and resolution of been elicited (Pollack et al., 2016). Bayesian algorithms and PageRank inconsistency among data sets (Gray & In order to attempt to identify analysis has pioneered the modern Thorpe, 2015; Neff, 2013). solutions to care transition problems, Internet to guide us in identifying Lim, Jarvenpaa and Lanham (2015) what information is trusted, and what reviewed published qualitative studies information is not. and came to the conclusion that time Solving this is beyond the scope Unstructured Data in the pressures were at the heart of many of any one health care institution, of the reported difficulties. While, as and, as such, I recommend first Context of Broader Data stated above, transitions have not yet using free tools made available by Needs been specifically researched on social Google itself. Public datasets can be media, public health questions on a analyzed for free in the Google Cloud In order to improve standards for care range of topics are beginning to be platform (https://cloud.google.com/ transitions and increase the quality profitably addressed by mining this public-datasets/). Boolean search of care generally, there is another, rich source of data (Ji, Chum, Wei & strings plugged into Google search, higher level of analysis – informed by Geller, 2015). e.g., ‘free data sets’ AND genes, or principles of equity and prioritization ‘free data sets’ AND ‘Ontario’ AND of need – that points out questions ‘health care’, are a good start. After that require the most urgent attention the data sets are found, a novice from a data gaps perspective (Golden, Meeting the Second unstructured data researcher can Hager, Gould, Mathioudakis & Challenge: Elegant insert them into the Google platform. Pronovost, 2017). One first searches for correlations and We need to understand the Organization and emerging patterns. Predictions can be human impact of care transitions on made from repeating patterns. patients, families and social networks; Operationalization The challenge of establishing the we need to know their economic veracity of the information requires impact on the health care system in Organizing the wealth of unstructured technology and systematic analysis terms of job satisfaction, health service data that can be obtained from by experienced researchers. A large costs, pharmaceutical costs, and costs various sources remains a major variety of methodologies are available to the legal system. We need to be able challenge. Advances in computer science, such as virtualization and cloud computing have made it possible to accommodate, link, We need to understand the human and analyze large, diverse data sets (Raghupathi & Raghupathi, 2014). impact of care transitions on patients, This requires a staged process by families and social networks; we need which the information from various sources initially needs to be pooled to know their economic impact on and distributed on open source platforms available in the cloud. the health care system in terms of Various statistical methods are used: cluster analysis, decision-tree learning, job satisfaction, health service costs, Bayesian networks, NLP, graph pharmaceutical costs, and costs to the analytics, and other data visualization approaches. The best guidance is to legal system. learn from search engine leaders,

46 April 2018 Table of Contents to identify best practices (Naylor et al., much we can rely on the validity of Privacy and security are insufficient; 2017), to determine the role of family unstructured data is an unanswered the data have to be accurate. physicians, the distinctive role of the question. Numerous bodies, including many health professionals involved institution-specific research ethics in care transitions, the role, if any, bodies, are investigating both of of paraprofessionals and alternative these challenges. Hacking a Path Forward care providers. We also need to Since global public health be aware of obstacles to smooth (notably in the field of pandemic I recommend an Ontario-wide transitions – currently thought to be surveillance) has seen some of the sponsorship of a ‘hackathon’ – a time pressures, faulty communication, earliest usages of unstructured data community of individuals bound fragmentation of services and on a global scale, it is not surprising by a common and novel mission, in inadequate staff training. that organizations such as the this case, refining the obstacles to One way to evaluate what we do Global Public Health Intelligence using unstructured data to promote in Ontario is to analyze data from Network (GPHIN) and the Public aspects of health care quality. Already, around the globe as they pertain Health Agency of Canada (PHAC) the Ontario start-up community to transitions – compare successes are setting forth ethical frameworks has a vested interest and desire to and failures and costs, and specific and publishing thought leadership participate. Ontario enjoys a diverse regional challenges to determine how to address evolving paradigms in the and passionate start-up community we might be able to do things better. ethics and privacy needs associated developing mobile health apps, Unstructured data lend themselves to with the use of unstructured data for and advancing health care data such comparisons. health care quality generally (Public visualization and data mining. Health Agency of Canada, 2015). Many of these start-ups have faced The broader framework of challenges monetizing their platforms ‘Privacy by Design’ (PbD) developed and understanding the needs of Recent Progress over a decade ago by the Information potential customers and partners. To and Privacy Commissioner of Ontario address all such problems, it would be Seven years ago, on behalf of The should, in the author’s opinion, strategic to bring together the people Change Foundation, I helped to write guide all application discussions most passionate and motivated to a report titled, Using Social Media to (Cavoukian, 2009). The PbD principle solve them; solutions could then be Improve Health Care Quality, in which of application “with special vigour shared. This is a low-cost first start to we identified the fact that the vast to sensitive data such as medical what may be a very high return on majority of North American health information” is important; however, investment for the Ontario health care organizations were not taking in the author’s view, there is a critical care system. advantage of social media data (i.e., amplification that should be stressed Many research teams are working the most commonplace form of open in the context of the unstructured on mining unstructured data, with source unstructured data), and thus data referred to in this article. That varied success. This is a growing were neglecting a source of patient- is, in the context of the application trend in other industries, and health driven information (e.g., complaints, of unstructured data to solving care would stand to benefit greatly expressions of unmet needs) that transitions-related policy issues, from this rich source of data which could, if accessed, potentially lead to PbD should, in the author’s view, be can present new opportunities for insights for quality improvement (The applied with special vigour to sensitive improving care perhaps, never before Change Foundation, 2011). data that is prone to misinformation. considered. Doing it well can lead Some progress has been made In other words, the challenge of to increased knowledge, decreased since then, as described above, veracity in the use of unstructured obstacles to the receipt of high-quality but probably not enough. Privacy data, referred to earlier, is inseparable care, and lowered costs, both human issues have remained barriers. How from the challenge of data privacy. and economic.

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FEATURE

Individual practitioners, clinics, References and hospitals need to heed what is being said about them and their Bernard, H.R. (2012). Social Research Lim, S.Y., Jarvenpaa. S.L. & Lanham, H.J. Methods: Qualitative and quantitative (2015). Barriers to interorganizational personnel on online service rating Approaches.University of Florida, USA: Sage knowledge transfer in post-hospital care sites. These anonymous criticisms, Publications, Inc. transitions: review and directions for information systems research. J. Manag. Inform. when taken seriously, can lead Cavoukian, A. (2009). Privacy by Design: Syst. (32), 48-74. to local quality improvement The 7 Foundational Principles. without necessitating large-scale Information and Privacy Commissioner Martin-Sanchez, F. & Verspoor K. (2014). Big data mining. On a larger scale, of Ontario. Retrieved from https:// data in medicine is driving big changes. Yearb. www.ipc.on.ca/wp-content/uploads/ Med. Inform. 14-20. only an expert group, sensitive to Resources/7foundationalprinciples.pdf Naylor, M.D., Shaid, E.C., Carpenter, D., Gass, overarching priorities in the sector of Davis, M.M., Devoe, M., Kansagara, D., B., Levine, C., Li, J., Malley, A & Brock, J.(2017). interest and their own institutional Nicolaidis, C. & Englander, H. (2012). Components of comprehensive and effective priorities, can begin to identify the Professional views on hospital to home care transitional care. J. Am. Geriatr. Soc. (65), strategic demands most in need of transitions. J. Gen. Intern. Med. (27), 1649–56. 1119-25. unstructured data. Along this journey, Gaspar, R., Pedro, C., Panagiotopoulos, P., & Neff, G. (2013). Why big data won’t cure us. technologists who are expert in NLP Seibt, B. (2016). Beyond positive or negative: Big Data (1), 117–123. and other machine learning processes Qualitative sentiment analysis of social media Normandeau, K. (2013). Beyond volume, can lend guidance to the art of the reactions to unexpected stressful events. variety and velocity is the issue of big data Computers Hum Behavior (56), 179e191 possible, but should not, of course, be veracity. Inside Big Data. Retrieved from Golden, S.H., Hager, D., Gould, L.J., https://insidebigdata.com/2013/09/12/ permitted to drive the setting Mathioudakis & N., Pronovost, P.J. (2017). beyond-volume-variety-velocity-issue-big-data- of priorities. A gap analysis needs assessment tool to veracity/ drive a care delivery and research agenda Pollack, A.H., Backonja, U., Miller, A.D., for integration of care and sharing of best Mishra, S.R., Khelifi, M., Kendall, L. & Pratt, Neil Seeman is Founder, Chairman and CEO practices across a health system. Jt. Comm. W. (2016). Closing the Gap: Supporting Qual. Patient Saf. (43), 18-28. of RIWI Corp.; a Senior Fellow of Massey patients’ transition to self-management after hospitalization. Proc. SIGCHI Conf. Hum. Factor College; Adjunct Lecturer in the Institute of Gott, M., Ingleton, C., Bennett, M. & Gardiner, C. (2011). Transitions to palliative Comput. Syst. 2016, 5324-36. Health Policy, Management and Evaluation, care in acute hospitals in England: qualitative Public Health Agency of Canada. (2015). Big University of Toronto and Senior Advisor to study. Br. Med. J. (342), d1773. data and ethics. Canadian Communicable Disease New York-based cyber-law firm Blackstone Gray, E.A. & Thorpe, J.H. (2015). Report, 41(9), 219. Retrieved from http://www. Law Group LLP. Comparative effectiveness research and big phac-aspc.gc.ca/publicat/ccdr-rmtc/15vol41/ data: balancing potential with legal and dr-rm41-09/assets/pdf/15vol41_09-eng.pdf ethical considerations. J. Comp. Eff. Res. (4), Raghupathi, W. & Raghupathi, V. (2014). About RIWI Corp. 61–74. Big data analytics in healthcare: promise and Greysen, S.R., Hoi-Cheung D., Garcia V., potential. Health Inf. Sci. Syst. (2), 3. RIWI Corp. (www.riwi.com) is a global Kessell E., Sarkar, U., Goldman, L. & Kushel, The Change Foundation (2011). Using Social survey, global messaging and global M. (2014). “Missing Pieces” – Functional, Media to Improve Health Care Quality. Change social, and environmental barriers to prediction science firm that has collected Foundation. Retrieved from http://www. recovery for vulnerable older adults changefoundation.ca/social-media- opinion data, machine data and unstructured transitioning from hospital to home. J. Am. healthcare-pt1 data from more than 1.2 billion web users in Geriatr. Soc. (62), 1556–61. Young, S.D., Rivers, C. & Lewis, B. (2014). every country and territory of the world for Ji, X., Chun, S.A., Wei, Z. & Geller, J. (2015). Methods of using real-time social media organizations such as the United Nations Twitter sentiment classification for measuring technologies for detection and remote World Food Programme, the World Bank, public health concerns. Soc. Netw. Anal. Min. monitoring of HIV outcomes. Prev. Med. the Bill and Melinda Gates Foundation, the (5), 13. (63),112–5. U.S. State Department, Freedom House, Kum, H.C. & Ahalt, S. (2013). Privacy-by- design: Understanding data access models and governments and corporations around for secondary data. AMIA Summits Transl. Sci. the world. Proc. 2013: 126-30.

48 April 2018 Table of Contents

SNAPSHOT

The Missing Peace in End-of-Life Care Anthony Dale, President and CEO, Ontario Hospital Association

In the spring of 2014, my family received life-changing news that our father, John, had cancer once again after undergoing a successful surgery only 18 months prior – and the prognosis was poor. Unfortunately, the news was delivered by a cancer specialist in a terse, detached manner – a theme that would be repeated as our family continued to navigate the health care system. In contrast, our initial encounter with the system, when the cancer surgery was performed, went smoothly. John had received high-quality care, as expected. However, once it was determined that the cancer had spread and surgery was no longer an option, he suddenly moved into a “blank zone”. Absolutely no one stepped forward to advise about what to do next, what resources or supports were available, and, most importantly, to discuss his end-of-life wishes. Navigating the system and advocating for our father was left to our family as our sole responsibility.

While the system excelled at providing traditional, episodic care, as soon as my father’s care fell outside these parameters, his experience and ours, as his caregivers, suffered. Ultimately, a crisis triggered his admission to a hospital The gaps in care along the way were evident. Because where he was treated to ease his pain. Unfortunately, my father received acute care outside of the community he passed away quickly in his hospital bed shortly after in which he lived, home and community care supports receiving treatment, in a room he had shared with another were exceedingly difficult to coordinate. Communication patient. It was exactly the place he did not want to be. My was sporadic, and often times, we had to pursue providers father had wanted to die at home, surrounded by his family. for follow-up and direction. My father’s wishes were not We tried our best to make arrangements in order to considered, and even as his health deteriorated, fulfill his request. However, because of how quickly his surprisingly, no assessment for palliative care support health had declined, the inherent gaps in the system and was made available. the various barriers we faced while trying to coordinate the

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home and community supports required for palliative care, Families and caregivers should not be left alone his dying wish was not met. with the heavy burden of advocating for care Looking back at the most trying times we have ever and navigating the system while dealing with the gone through as a family and the helplessness that we had emotional turmoil of tending to an ailing family all felt, I still consider my family among the luckier ones because of the support we were able to lend our father member. at his time of greatest need. However, it was still a As a system, we need to ensure that receiving care is not shocking experience. an uphill climb. This means acknowledging that innovation and real investments are needed across the continuum, While there were pockets of care that were especially in the home and community care sector and excellent, the experience as a whole was in palliative and hospice care. Equally critical is making a disjointed. genuine and concerted effort to establish care plans based on an individual’s unique needs and grounded in preserving Siloed thinking seemed to be present both at the a patient’s dignity. individual and system level – no one considered my father’s My personal experience has taught me that we must act broader needs or tried to weave together the various decisively, selflessly and courageously so that patients and aspects of his care. Instead, people focused only on his their families can have peace of mind knowing that the right immediate needs as defined within their narrow scope kind of care is available for them no matter where they are in of responsibility. their health care journey.

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OHA’s Learning Centre Visit www.oha.com/learningcentre FEATURE

Alternate Level of Measurement? Learning from ALC Experiences to Improve System Performance

By: Kerry Kuluski, MSW, PhD

52 April 2018 Table of Contents Developing a holistic view of patients, rather than limiting this view to a single point in time, is necessary if we are to effectively address the ALC challenge.

Institutes of Health Research, that works for people, we need to provided a forum for stakeholders – marry these data with people’s stories, providers, policy planners, patients, particularly the stories of people in ne of Ontario’s top caregivers and data developers – the trenches of ALC: patients, their health care goals to reflect on future directions to families and providers. Capturing is for people to address ALC with a strong focus their stories may point us toward receive the right on measurement and personal person-centred solutions to the ALC care, in the right care experiences. challenge, which is another goal Oplace, at the right time (MOHLTC, At this symposium, Professor of Ontario’s health system with the 2016). Our persistent Alternate Jon Glasby, Head of the School of passage of the Patients First Act (2016). Level of Care (ALC) challenge Social Policy at the University of signals that we still have some work Birmingham, referred to ALC as to do. In Ontario, about 15 per the “deep hospital”. It refers to a cent of inpatient hospital beds are phenomenon observed by those in Capturing Missed occupied by people who require the field: the deeper – or perhaps care elsewhere (usually care at home longer – a patient is in hospital, the Opportunities to or long-term care). This number is harder it is to get out. What can we do Intervene persistent and growing, reaching to avoid the deep hospital? upwards of 25 per cent in northern As a start, we can look at the At a health system level, we tend not Ontario (Access to Care for the data we currently have to better to measure experience across settings Ontario Hospital Association, 2017). understand the problem. In Ontario, or take into account the rather The ALC and Performance Cancer Care Ontario’s Access to Care complicated, messy, cumulative or Measurement symposium held at branch provides real-time ALC data, longitudinal experience of patients Sinai Health System (Bridgepoint including the numbers and care and caregivers. Despite its messiness, Hospital site) at the end of June destinations of all ALC patients in gaining a snapshot, over time, of 2017, funded by the Canadian acute and post-acute hospitals across this experience will help us see and the province. This data resource understand these individuals within provides a huge opportunity for a broader context. Capturing this Ontario’s health system to address broader context is vital to identifying the issue and develop a capacity plan. solutions to the ALC challenge that However, to truly understand how to will work in the longer-term. build capacity in the system in a way

Table of Contents Redefining Health Care 53 FEATURE

Using a hospital admission as health care challenges. This, in turn, an example, we can ask: “What were Measuring What Really will help us identify what supports the events leading up to the person’s we can put in place as a system to hospitalization? Why do they return Matters enable more seamless care across the to the hospital? What are the barriers continuum, effectively address current to staying at home? How can we Understanding patients’ view of patient and caregiver needs and make it easier for the person and quality is essential to developing a ultimately reduce ALC. their caregiver in their day-to-day performance measurement strategy activities?” and appropriate metrics that reflect While some organizations are this view. Measurement tools have pre- already asking these questions, we conceived assumptions of the things Considering the Voice still need a population-level stock of that shape a patient’s experience and answers to these questions to make may (by virtue of the questions asked), of Caregivers – Paid and a stronger case for future health miss aspects of experience that are Unpaid reforms. These questions will likely important to people, and specifically lead us outside the confines of the in this discussion, contributors to Another critical consideration in any health care system and necessitate the ALC challenge. While current measurement and action strategy relationships with other sectors, such measures tap into important elements is to understand health outcomes, as housing, finance, transportation, of experience like the relational experiences, and costs for all types and other community supports. aspects of care (e.g., were you treated of care providers (both paid and They also inevitably bring us to with respect and dignity?), we need to unpaid). the whole notion of prevention. look beyond these elements. When patients enter the system, Professor Glasby’s research revealed The needs and priorities of do we document if they have a that there were missed opportunities patients and caregivers might not caregiver and what their capacity to to intervene in the period of time have anything to do with a particular care is? Do we consider how we can before hospitalization that could health care service, a relationship they best support them (now and when the have potentially made a difference have with a provider, or a particular person they care for returns home)? with respect to prevention (Glasby & disease or symptom. Asking, “What Unpaid family members and Littlechild, 2016). are your goals?” and “What are you friends play a crucial role at all stages Developing a holistic view of most afraid of?” could signpost where of the patient’s illness, including care patients, rather than limiting this view people’s needs may be greatest. Post- of the patient during the ALC phase to a single point in time, is necessary discharge questions, such as, “Were (Kuluski, Im, & McGeown, 2017), and if we are to effectively address the you confused?” and “Were you given therefore, are an integral aspect of ALC challenge. What we’ve learned a number to call; if so, was it helpful?” solving the ALC challenge. Moving so far from patients’ experiences and are other questions that would signal past ALC and into post-discharge care Professor Glasby’s research is that communication breakdown, poor is highly contingent on a caregiver’s isolated initiatives are insufficient access to resources, and other areas willingness and availability to responses to such a complex issue. that need attention. continue to provide care and Any effective solution will take time, The growing challenges with support. Ironically, they may be left decisive action and collaboration ALC can be viewed as symptomatic out of relevant discussions (Jeffs et across the system. of a greater problem within the al., 2017). system as whole. By measuring Caregivers need to be formally what really matters to patients and identified, as they themselves may caregivers, we have a better chance not call themselves, or recognize of arriving at the root of patients’ themselves, as caregivers. Caregivers

54 April 2018 Table of Contents may have important questions about circumstances which can impact their how to provide care (which can health, their ability to recover or Kerry Kuluski is a Scientist at the include heavy personal care), and maintain their health, and inevitably, Lunenfeld-Tanenbaum Research Institute, how to seek supports for self-care. their health outcomes. Sinai Health System and Assistant Caregivers often suffer from heath In a system that is struggling Professor, Institute of Health Policy, consequences (they can become with capacity issues due, in part, Management and Evaluation, University patients) and endure large sums of to an aging and growing population, of Toronto. out-of-pocket and opportunity costs. we need to consider marrying Co-authors: Greater understanding of how people’s lived experience with caregivers fit into patients’ health quantitative data, and perhaps we Greg Cressman care journeys cannot be overlooked can introduce more thoughtful Bereavement Coordinator, Lisaard House if we are to effectively address the and enduring solutions to a long- & Innisfree House Hospices ALC issue. Providers can use this standing challenge. Sandra Dickau RN MN information to develop better Director Complex Continuing Care, supports for caregivers and also In-Patient Rehabilitation, Family & optimize the way the system References Community Medicine interacts with them to enhance Access to Care for the Ontario Hospital Michael Garron Hospital/Toronto East patient outcomes. Association. (2017). Alternate Level of Care Health Network These strategies must be coupled (ALC). with support for paid care providers. Glasby, J., & Littlechild, R. (2016). ‘Who Penny Ericson, RN (Retired), MScN Similarly, we must ask, “How can paid knows best?’ Older people’s contribution Co-chair Patient/Family Advisory providers be supported in their role to understanding and preventing avoidable Committee at Horizon Health to capture the patient and caregiver hospital admissions Retrieved August Former Dean and Professor Emeritus, story and be resourced to respond?” 18, 2017, from http://www.birmingham. University of New Brunswick ac.uk/news/thebirminghambrief/ It is easy to criticize the decisions items/2016/09/who-knows-best.aspx Julia W. Ho, PhD(c) and practice patterns of providers Jeffs, L., Saragosa, M., Law, M.P., Kuluski, Institute of Health Policy, Management and when we don’t consider the busy K., Espin, S. & Merkley, J. (2017). The role Evaluation, University of Toronto and unpredictable contexts in which of caregivers in interfacility care transitions: they work, which leaves little time for a qualitative study. Patient Prefer Adherence Pamela Jarrett MD FRCPC FACP important conversations with patients (11), 1443-1450. Geriatrician, Horizon Health Network, and families. Kuluski, K., Im, J., & McGeown, M. (2017). Saint John New Brunswick “It’s a waiting game” a qualitative study of Associate Professor of Medicine

the experience of carers of patients who Dalhousie and Memorial University require an alternate level of care. BMC Health Serv Res, 17(1), 318. doi: 10.1186/ Rebecca Lum, BSc, MSc Candidate Taking a Comprehensive s12913-017-2272-6 Institute of Health Policy, Management and View Ministry of Health and Long-Term Care Evaluation, University of Toronto (MOHLTC). (2016). Patients First. Reporting Dr. Rose McCloskey RN back on the proposal to strengthen patient- PhD Professor, Department of Nursing The patient and caregiver voice can centred health care in Ontario. Retrieved from lend greater depth and understanding http://www.health.gov.on.ca/en/news/ and Health Sciences, University of New to a complex problem such as ALC. bulletin/2016/docs/patients_first_report_ Brunswick, Saint John back_20160602.pdf In attempting to capture their Sara Shearkhani, PhD student experiences and perspectives, we Institute of Health Policy, Management and need to ensure that we are asking Evaluation, University of Toronto the right questions, and taking a Co-Founder, Family Caregivers Voice more comprehensive view of their

Table of Contents Redefining Health Care 55 1. Can you describe an experience when you Through the Eyes transitioned from one health care setting to of Patients and another? My father-in-law, Jerry, had a hemorrhagic stroke. He was Caregivers: transitioned from our acute care hospital to the regional stroke rehab unit. He was 79 years old. At that time, I had Jeannie Faubert already been a patient/family advisor at the acute care hospital, and was well-versed in the patient- and family- Redefining Health Care spoke to centred care approach. a number of former patients and caregivers to ask for their view 2. Can you reflect on how your transition about care transitions. impacted you and/or your caregiver? Due to the timing of the transfer, Jerry was never oriented Jeannie is a retired elementary school teacher. She is to the new ward nor was the family. We had no idea a Patient and Family Advisor (PFA) at Thunder Bay about meals, policies regarding physiotherapy, speech Regional Health Sciences Centre (TBRHSC), which or occupational therapy assessments and programming, has been granted a Leading Practice Award in Patient nor that there were laundry facilities in house for families Family Centred Care by Accreditation Canada, to access. We felt that this information should have been volunteers at the TBRHSC emergency department shared via a tour, or at least, some kind of patient/family doing patient surveys, and is involved with various information paperwork. patient advisor initiatives. Jeannie continues to be inspired by the commitment of TBRHSC, and enjoys the many rewarding opportunities she has had as a In contrast, at the acute care hospital, PFA to contribute to quality improvement efforts in we always knew what was on the daily hospitals and research efforts in health care. schedule and who was looking after Jerry in terms of nursing because of the use of the white board.

56 AprilMarch 2018 2018 Table of Contents It was a transparent system that worked well. At the I also later learned that the rehabilitation hospital has rehabilitation facility, there was minimal communication a patient and family advisory council (PFAC). I discovered with us – the family – or the patient. We also observed that the PFAC was not easy to join and had more staff than that physiotherapy schedules were not adhered to as actual patient/family advisors. Membership was closed, announced on their boards. To go from feeling informed to meaning that at the time, they were not recruiting any being uninformed, raises anxiety needlessly. new members. Members were also only accepted from As well, during the transition from one provider to certain practice areas (e.g., mental health services, chronic another, I felt that we were not involved or consulted in the disease management). From my perspective, it seemed as discussion. We were basically informed that when Jerry though the PFAC was not empowered and set up to make was in safe condition, he would be transferred from the meaningful changes that would support and improve the acute care hospital to the special stroke rehab unit. patient and family experience. Looking back, we felt that there was no continuity of care between the two facilities. It was as if each I had ideas for improvement, but I found organization was not particularly concerned about the care Jerry received outside of their facility, as long as they did it difficult to find someone who would the job they were supposed to do. In short, there was a lack listen. of continuity between the two facilities about how patients were communicated with and treated, so we were left to We also feel that the organization could have done a adjust to each organization’s way of doing things, rather much better job at addressing our complaints and needs. than them meeting our expectations and needs using a Instead, we felt as though we needed to take exceptional more standardized approach. measures to have our needs heard. Interestingly, this experience was very different from the acute care 3. What could have been done differently to facility where we felt that patient and family engagement make the experience better for you? was sincerely adhered to, and in fact, was part of the strategic plan. I feel that there should have been more of an orientation I hope that patients and their families can come to to specialty wards for patients/families. Someone at the expect standard treatment across the system, regardless receiving facility should have to sign off on this when a of facility. I would also like to see a more universal desire to patient is admitted. In the same vein, facilities need to have involve patients, listen to their concerns, and provide them similar, consistently used methods of communication with with a more consistent experience, no matter where they patients or families (e.g., white boards with an expectation are receiving care. and commitment to use them). Doing so would improve the process considerably, particularly in a community where facilities are working together regularly.

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International Perspective: Investigating ALC through Patients’ Lived Experience

In June 2017, Professor Jon Glasby was the keynote speaker at the Ontario Hospital Association (OHA) conference entitled, “Alternate Level of Care: Capacity Solutions and Practical Approaches.” Alternate Level of Care (ALC) is a designation for patients who experience a delayed discharge because they are waiting for a more appropriate level of care. Professor Glasby’s work underscores the importance of drawing on the tacit knowledge of people with lived experiences – including patients, caregivers and frontline professionals Q&A – to better understand and solve issues at stake, including delayed transitions and transitions in and out of hospital. with Dr. Jon Glasby, We interviewed Professor Glasby to learn more about his research and Professor of Health and Social Care how he has captured the voices of and Head of the School of Social Policy, patients, caregivers and health care professionals to improve patient University of Birmingham, U.K. experience across the continuum of care.

58 April 2018 Table of Contents Can you tell us what you have professionals, older people with recent For example, we learned from learned about transitions of experience of emergency hospital them that even if an admission was Q care through your research admission, general practitioners ‘appropriate’ (i.e., needed on that with service users and staff? and hospital-based doctors, as well given day), there may still have been as multidisciplinary focus groups. opportunities and the capacity to do In 2012, we carried out a study We conducted this research because things differently at an earlier stage, JG | entitled, “Understanding and with an aging population and with which would have helped prevent improving transitions of older people: pressures mounting on acute care, someone’s health from deteriorating a user and care centered approach”, emergency hospital admissions of into a crisis. These older patients thus that involved in-depth narrative older people has become a key policy distinguished between ‘inappropriate’ interviews with older service users and issue and the subject of significant and ‘preventable’ admissions – in caregivers. We learned from them that media debate in the U.K. contrast to frontline staff (who, by care transitions involve far more than What we found was that, in our definition, only came into contact a move across services or settings. sample, most older people were with the person when they came Participants in this study experienced admitted to hospital appropriately through the front door on the day transitions on a number of different according to system standards. in question, often already sick or levels: However, these patients provided injured). Overall, older people had a 1. Physical, including bodily changes fascinating detail, and they often more nuanced approach to the issue as well as use of services; had a more sophisticated notion of as many were able to identify earlier 2. Psychological, with changes in preventing admissions than service actions which might have prevented their identity or sense of self; and providers. their admission altogether. 3. Social, with changes in their relationships with partners, family We found that while the physical aspects and friends. of transition are often a priority for service These different transitions often happened simultaneously, and if providers, the importance of the psychological circumstances made coping difficult and social aspects was frequently overlooked. in one type of transition, then it was likely to have an effect on others. We found that while the physical aspects of transition are often a priority for service providers, the importance of the psychological and social aspects was frequently overlooked. Between 2014-16, we carried out national research entitled, “Who knows best? Older people’s contribution to understanding and preventing avoidable hospital admissions,” where we set out to understand the appropriateness of hospital admissions for older people. We looked at the issue from the perspective of health and social care

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Although policy and the media problems. It’s more about a change 2. For older people with dementia often claim that we could reduce in mindset which seeks to listen more and those with ongoing emergency admissions if we could attentively to older people, sees their health difficulties, life involves care for frail older people more needs more holistically and which is continuous change. Service appropriately in the community, determined to ‘get it right first time.’ providers, therefore, need to see we found that the vast majority of the management of difficulties our sample felt they needed to be How have the results and as an ongoing process and in hospital (as did all participating learnings from your research should be flexible to respond general practitioners (GPs) and Q been applied? to changing needs. If their role hospital doctors). It’s possible that and responsibility only relates some people are admitted to hospital JG | Our 2012 study provided a to a small part of that process, when they don’t need the services series of recommendations their own actions nevertheless provided there, but we didn’t see based on the lived experiences need to be taken in the context this in our research. Indeed, many of older service users and their of understanding the longer-term older people were doing everything caregivers, for health and social process. they could to stay away from/out of care practices. There were four 3. Advance notification and hospital, possibly even jeopardizing recommendations specific to better preparation play a vital role in their health by not seeking help managing transitions: helping people to manage the sooner. Even though they identified 1. People value and benefit from emotional and practical aspects some cultural and service changes having one key person who can of transition, and to exercise that might lead to a more long- link them with other services and some control over the process. term, preventative approach in time, who is there to support them Participants varied in their desire there were no quick fixes or easy when they need it. For older for involvement in decision answers. Policy-makers and health people undergoing any type of making at times of transition, but services hoping to dramatically transition, the nomination of all wanted to be kept informed reduce emergency admissions by a key person who will provide about what the likely next stages setting up ‘service X’ or introducing continuity of support and act as of their care would be and the ‘intervention Y’ might therefore be a link to other services would anticipated timeframe. Effective disappointed! None of the findings address many of the difficulties communication includes identify a single service that could identified by older people in communication about uncertainty. be established or a discrete course our study. 4. Closer integration of services – of action that could resolve such especially across health and social care – would have a considerable positive impact on older people’s People value and benefit from having one experiences of transitions. However, there remain significant key person who can link them with other barriers to closer joint working services and who is there to support them (not least a series of financial barriers and incentives based when they need it. historically on single-agency approaches), and leadership at national, regional and local level is needed to overcome these.

60 April 2018 Table of Contents Sometimes, the issues at stake and the solutions proposed seemed National Voices: “I Statements” to be ‘someone else’s problem’ – with everyone else needing to do Person-centred co-ordinated care means that: something different (rather than ‘me’ needing to do something different). “I can plan my care with people who work together to understand me and my carer(s), Overall, I hope we’ve started a allow me control, and bring together services to achieve the outcomes important to me.” debate about ‘who knows best?’ (the sub-title of our study). Understanding In relation to care transitions, person-centred co-ordinated care the experience of older people and means that: their families, and of frontline staff, isn’t an optional extra. It is a vital “When I use a new service, my care plan is known in advance and respected. component to addressing this difficult challenge. Tackling emergency When I move between services or settings, there is a plan in place for what happens next. admissions is complex and multi- I know in advance where I am going, what I will be provided with, and who will be my faceted, and only an equally nuanced main point of professional contact. and multi-faceted approach is going to help generate solutions. I am given information about any medicines I take with me – their purpose, how to take them, potential side effects. How does the NHS measure and use the patient and If I still need contact with previous services/professionals, this is made possible. caregiver experience to find If I move across geographical boundaries I do not lose my entitlements to care and Q solutions to transition patients support.” across the continuum more effectively?

JG | Like many health systems, From our 2014-16 emergency However, this could sometimes most of our approaches have admissions research, we drew up feel like a very ‘hospital-centric’ view, traditionally been single-agency national good practice guidance with the risk that we value partner in focus, making it difficult to (based on the experiences of older agencies for what they can do for us, understand how patients and their people and health professionals) and rather than as an important service families experience the overall health distributed this free of charge to all in their own right with their own and social care system, or transitions hospitals, Directors of Social Services priorities, strengths and ways of between services. However, a national and lead GPs in England, as well as working. coalition of patient charities, National produced a free training video (see There was less sense in our Voices, has produced helpful work on below for further details). interviews with staff as to how defining the outcomes of integrated For example, the guidance speaks hospitals were systematically care from the perspective of people to the need for hospitals to better informing themselves, their staff and using services (known as the ‘I collaborate with their community their patients of what community or statements’ or a ‘narrative for person- partners. Most health professionals voluntary sector alternatives exist, centred, coordinated care’). There talked about the role that community how they were supporting partners to has also been further work to look health services and social care could achieve their own priorities and how at how we might measure people’s play in reducing the need for hospital the hospital might need to adapt its experiences of integrated care. While admissions. own practices. there is no single approach that could do this well at the moment (and

Table of Contents Redefining Health Care 61 FEATURE developing a new, bespoke approach For further details and resources on the emergency would be expensive and difficult to admissions study, see the following resources available on implement), this work did make a series of practical suggestions for www.birmingham.ac.uk: developing existing datasets and measures to help provide greater insight. A more recent article in the International Journal of Integrated Care has also taken this on by developing a new survey tool to capture the experiences of older people with A national good practice guide sent to chronic conditions regarding all English hospitals, leads GPs and how well their health and (where The full research report applicable) social care is coordinated. Directors of Social Services However, for me, this isn’t a substitute for actually talking to and engaging View the free training video, How older people can help understand & prevent with people using services, their avoidable hospital admissions, on Youtube (published in 2016 by the Social Care families and frontline staff – maybe Institute for Excellence). they have experiences and answers that our current measurement systems, tools and services do not tap into.

What can other jurisdictions, Q like Ontario, take away from your research?

It sounds basic, but a key JG | message from our research is that older adults and service users are experts by experience. No one A free training video hosted by the national Social Care Institute for else, no matter how well-trained or Excellence (SCIE) educated, can possibly have had the same experience of deteriorating For further information on the transitions study, see: Ellins, J., Glasby, J., Tanner, D., health, trying to seek help and McIver, S., Davidson, D. & Spence, K. (2012). Understanding and improving transitions admission, the hospital stay and of older people: a user and carer centred approach. Birmingham, Health Services subsequent discharge. This is a Management Centre/National Institute for Health Research. critical source of expertise that we often overlook, but that we neglect For further details, and a resource pack on working with service user co-researchers, at our peril. visit: http://www.birmingham.ac.uk.

Both these studies were funded by the National Institute for Health Research (NIHR), and the views expressed here are those of the lead author, not of the NIHR, the NHS or the Department of Health.

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