Patient Information Forum Guide to Health Records Access
This guide has been supported www.pifonline.org.uk by a grant from Microsoft The Patient Information Forum Our role is to: Intro The Patient Information Forum is the UK support providers of health information membership organisation for people who enhance the patient experience work in consumer health information (CHI). improve outcomes by raising the standard We are independent, not-for-profit and of consumer health information. 1 cross sector. Our members include NHS We campaign to raise the profile of organisations, both local and national,
consumer health information, encouraging 2 patient organisations, commercial organisations and policy makers to recognise companies, academics and policy-making the value and impact of good health organisations.
information. We understand the needs of 3 Our mission is to ensure that everyone can health information providers and support access relevant, high-quality information them in their work by fostering and enabling and support to help them understand their collaborative working; raising the standard 4 care and make confident, informed decisions of information; and facilitating the sharing of about their health and wellbeing. expertise.
We believe in championing informed choice Our members benefit from a range of 5 and helping people feel confident about the services, including a weekly email newsletter, decisions they make. We, and our members, events, workshops and regional meetings, are passionate about the benefits of health an annual conference, a query service and a 6 information and constantly strive for range of resources and tools on our website. excellence.
For more information about the Patient 7 Information Forum and membership please
go to www.pifonline.org.uk Feedback
Page 2 The Patient Information Forum www.pifonline.org.ukwww.pifonline.org.uk Contents
Welcome ...... 5 Case studies included in this guide:
Introduction to the guide ...... 6 Intro Brain Tumour Patient Information Portal...... 49 Chapter One: Putting record access into context ...... 8 Why is the shared Personal Health Record (PHR) so important? ...... 9 Cerner Patient Portal ...... 50 What is record access? ...... 11 EMIS Patient Access ...... 51 Health records - the current situation ...... 11 1 eRedbook ...... 52 From record access to shared Personal Health Records ...... 16 Shared social care records...... 19 Haughton Thornley Medical Centres...... 53 Conclusion ...... 21 HealthSpace ...... 54 2 Chapter Two: The patient and citizen perspective ...... 22 Kaiser Permanente ...... 55 Public reaction to PHRs ...... 22
Potential benefits to patients ...... 23 Looking Local ...... 56 3 Challenges of PHRs ...... 25 MyALERT ...... 57 Possible solutions ...... 29 My Diabetes My Way ...... 58
Chapter Three: The health and social care professional perspective ...... 31 4 Professionals’ reaction to PHRs ...... 31 myhealth@QEHB ...... 59 Real benefits for professionals ...... 32 myRecord ...... 60 Challenges for professionals ...... 35 NHS Arran and Ayrshire Patient Portal ...... 61 5 Possible solutions ...... 38 Chapter Four: The commissioner and health system perspective...... 40 PAERS iPatient ...... 62 Net benefit to the health system ...... 40 Patients Know Best ...... 63 6 The Information Strategy for England ...... 41 Renal PatientView ...... 64 Making PHRs a reality...... 42 Chapter Five: Conclusions ...... 45 South London and Maudsley NHS Foundation Trust ...... 65 Chapter Six: Useful resources and glossary ...... 46 TPP SystmOne ...... 66 7 Useful resources ...... 46 Tribal Patient Relationship Management ...... 67 Patient information on record access...... 47 Feedback Glossary of terms ...... 47 University Hospital Southampton Chapter Seven: Case studies ...... 49 NHS Foundation Trust ...... 68 Feedback ...... 70 US Department of Veterans Affairs ...... 69
Page 3 Contents www.pifonline.org.ukwww.pifonline.org.uk About the authors
Authors Acknowledgements Cost: Free to download from the website Geraldine Mynors PiF would like to thank all of the PiF members (www.pifonline.org.uk). Intro Emily Newsom-Davis and other organisations who contributed case £20 (+VAT) for a printed copy. studies, perspectives and references for this This guide was informed by: © Patient Information Forum 2012 guide. In particular, we would also like to thank 1 Production of this guide was supported by a grant An extensive literature review the following for their input: from Microsoft. The views expressed in this publication Interviews with clinicians, commissioners Mohammad Al-Ubaydli, Patients Know Best are those of the authors and contributors and are not
necessarily those of the sponsors, Microsoft. 2 and opinion leaders Yvonne Bennett, Patient, Haughton Thornley An invitation to electronic health record Medical Centre suppliers to contribute case studies Kate Betteridge, Neil Betteridge Associates 3 A consultation event with patients and the Gary Birkenhead, University Hospital of public held in February 2012 North Staffordshire A policy roundtable event held in March 4
2012. Professor Iain Buchan, University of Manchester This is a fast-moving field, and although 5 we have tried to make it as evidence-based Anne Casey, Royal College of Nursing as possible, some views are of necessity Bruce Elliot, DH Informatics Directorate informed by expert opinion. Brian Fisher, PAERS 6 The case studies included in this guide are not exhaustive, but represent the broad range of Arif Govani, Microsoft
Personal Health Record and Record Access Penny Hill, Mortimore Hill Associates 7 projects currently operating around the UK. Rachel Iredale, Tenovus Feedback Ninjeri Pandit, London Connect
Page 4 About the authors www.pifonline.org.ukwww.pifonline.org.uk Welcome
As a patient lucky
enough to have ‘Information is an essential service in ‘The aim is for everyone to benefit - Intro access to my GP “its own right, allowing us to understand “irrespective of whether we can access record online, I our own health, choose healthier the internet, have other translation, lifestyles, and choose the treatment and communication or support needs - and
am very keen that 1 1 everyone else support that is right for us.’ for information to improve health and should be offered care and to reduce inequalities. This will mean that some of us will need extra a similar service. 2 There are countless support to use information as a core part 1 advantages to of our care services.’
this new way of interacting with the health 3 service, including becoming a better- informed, active patient, and feeling more in control of your health and care. I 4 have been delighted to contribute to PiF’s understanding of Personal Health Records and think this guide does a valuable job in 5 spelling out what needs to be done to make access to electronic health records a reality for everyone. 6 Yvonne Bennett Patient, Haughton Thornley Medical Centres 7 Feedback
1 The power of information: putting all of us in control of the health and care information we need. Department of Health, 2012. http://informationstrategy.dh.gov.uk
Page 5 Welcome www.pifonline.org.ukwww.pifonline.org.uk Introduction
This guide is about shared Personal Health Records (PHRs) - an exciting new Chapter 1 defines PHRs and explains the Chapter 4 describes the benefits of PHRs Intro development with enormous potential to different levels of access, patient co- from the commissioner and health system facilitate a step change in the extent to which production and cross-organisational perspective. It summarises what steps individuals are involved in managing, and integration which are possible. It sets PHRs towards record access are included in the new 1 making decisions about, their health. This in the context of the development of record Information Strategy for England, but also guide is aimed at practitioners, managers access in the UK and the newly launched highlights important issues still to be tackled and patient organisations in health and Information Strategy for England. by all four UK health systems in order to give 2 social care in the UK. It gives a vision for the Chapter 2 describes the patient and citizen PHRs a chance to realise their full potential. future of Personal Health Records, and an perspective on PHRs. This includes the Finally, there are chapters with case studies, understanding of some of the challenges potential benefits, such as improved health and further reading, useful resources, and 3 and barriers which must be overcome in and communication, but also some of the a glossary of terms. order to realise their full potential. It points to risks, such as concerns about safety, and
This guide is being published at a time when 4 solutions to these barriers and is, in effect, a widening health inequalities. the health records landscape in the UK is call to action. Chapter 3 discusses PHRs from the health changing at a rapid pace. We are keen to
The guide brings together the perspectives and social care professional perspective. hear what you think of it and to learn from 5 of policy makers, clinicians, suppliers and It explains some of the concerns about PHRs you about any areas that we may not have patients themselves. The case studies which have been barriers to their widespread covered, or where PiF could usefully do
illustrate the current status of record access uptake. It counters these with some of the further work. There is information at the end 6 around the UK and the rest of the world. benefits seen when PHRs are implemented in of the guide about how to feedback your practice. comments to us. 7 Feedback
Page 6 Introduction www.pifonline.org.ukwww.pifonline.org.uk Introduction
Shared Personal Health Records - a vision for the future Box 1 Intro
Maria is a 39-year-old woman. After having track of what’s going on. Everyone can see and is confused at times. Unfortunately she two children she has put on a lot of weight when his appointments are, what tests are has never been much good with computers so she is on a health kick. She is starting to due, and the results as they come through. so attempts at getting her to use an online 1 run and cycle regularly and her smart phone Maria is becoming a dab hand at taking health record have failed. But she has automatically records her exercise from her photographs of his eczema flare-ups and nominated Maria to be able to access her 2 pedometer and downloads it into her PHR. saving them in his record. This helps her and record, along with her community care team, Her bathroom scales also transfer her weekly the doctors to see which creams are working, so Maria can see when someone’s going in weigh-ins. And she uses her phone to keep a and she is able to email them for advice, to see her mother and what has been done. 3 record of what she eats. When she logs on to rather than always having to take time off They make a note of her mood and mental her PHR she can see how many calories and work and school to go to the hospital. And state too, so when Maria takes her to see the how much fat she has had, and seeing this she can order repeat prescriptions online and doctor they all have a clear idea of how she is 4 plotted against how much weight she has lost make appointments. The dietician has helped doing. There is even an app that links Maria, is really helping to keep her on track. When her put together a list of what food he can her family and her mother’s local friends
she saw her practice nurse recently they were and can’t eat, and it is even linked to specific so that they can see when a visit might be 5 able to look at the results together and the brands. This is invaluable for friends, family welcome, or if any chores are needed. nurse then sent her some links to lifestyle and school to check what he can eat, and she Maria doesn’t know how she would manage
advice, which she has stored in her PHR too. can allow access to this document to whoever without all this technology. Imagine if she 6 One of Maria’s sons has severe allergies and, needs it. had to make an appointment every time she since she has linked his GP, dermatologist, Maria’s elderly mother, who lives in sheltered needed to speak to a health professional, paediatrician and dietician together via his accommodation, has been causing a lot of or had to wait for letters to arrive from the 7 PHR, she is finding it much easier to keep concern recently. She has mild dementia hospital! Feedback
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Information is pivotal to good-quality care.
It allows us to understand how to improve ‘From a patient’s perspective [using a everything out and can even take that when Intro our own and our family’s health, to know “PHR] means being an active partner in the we go and see another doctor... And in the what our care and treatment choices are, and doctor-patient relationship; your whole community, if there’s a district nurse coming relationship changes. You’ve gone from to your house you can show them your
to assess for ourselves the quality of services 1 and support available.2 being told what’s happening - it becomes latest blood results. And perhaps if you’ve a discussion. It’s a relationship that is based got a family that’s split up, say your parents England’s new Information Strategy on trust. It’s about having choices and are in sheltered accommodation and embraces the way information and 2 being a happy patient, and making sure you you’re looking after them, and if they are technology can positively change our lives. are getting the best possible care. That’s agreeable, you can keep an eye on what’s It recognises that information must drive what I am experiencing now. Things are going on. And our time is important. It saves better health, care and support. 3 changing. We’ve got ‘Choose and Book’, time to get results. And you can get your In the Chancellor’s 2011 autumn statement, there’s lifestyle courses and things like the results translated if you can’t speak English, the Government pledged that everybody in
expert patient programme, and record or you can show them wherever you are 4 England will have online access to their GP access. We can order repeat prescriptions, in the world. And you can print everything records by 2015, as a first step towards wider and check our medications. And we can get out, like what’s happened recently and your
access. The Information Strategy puts some into our actual medical records, so we can medicines, when you’re going in to hospital, 5 detail around how this will be achieved. check results and X-ray reports online; we so that the information is there.’ However, the Government has avoided can read the letters, and we can also print 60-year-old woman and keen PHR user
central direction and so leaves the arena 6 wide open for local innovation.2 7 Feedback
2 The power of information: putting all of us in control of the health and care information we need. Department of Health, 2012. http://informationstrategy.dh.gov.uk
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Of course, having any access to our health Why is the shared Personal Health records is a huge leap forward from where Record so important? ‘Whether or not it reduces costs, it’s morally Intro we are now. But access is not enough. right.’ PiF policy roundtable event PHRs are the greatest innovation in the field “ Patients increasingly want to make active of health information for generations. As such,
use of their records. The vision now is for 1 they herald an enormous cultural change for shared PHRs - see box 2. These enable all of us. By understanding the power of PHRs individuals to truly be at the centre of their International definition of PHR Box 2 and supporting their implementation and care. 2 use, organisations that produce and provide There has been lack of consistency in how A shared PHR is a physical or electronic, health information are ideally placed to help the term PHR is used. The International patient-controlled copy of all the health make patients and the public more confident,
Organization for Standardization has defined it 3 information stored about an individual by empowered and informed. as follows: health and social care organisations, to which the individual can add their own data. A PHR of an individual is a representation ‘In a networked health information of information regarding, or relevant to, the 4 There are many ways shared PHRs could environment, various data holders, health, including wellness, development become a reality. A patient could see their “ including consumers, keep multiple and welfare of that individual, which may
entire NHS record, and be able to annotate 5 copies of health data. There is no be stand-alone or may integrate health and add their own data, and share it with default ‘source of truth’. Every piece of information from multiple sources, and for others. Or an individual could subscribe information must be evaluated based which the individual, or the representative to a system they choose, collect their own 6 on many factors, including its source.’ to whom the individual delegated his or her information and import records from all Markle Connecting for Health rights, manages and controls the PHR content their health providers. The options are Collaboration3 and grants permissions for access by, and/or numerous, but the vision is the same: 7 sharing with, other parties. people in control of their own data.
Health Informatics - Personal health records - Feedback Definition, scope and context. (ISO/TR 14292:2012)
3 Markle Connecting for Health common framework for networked personal health information. www.markle.org
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PHRs to support self management - the bigger picture Box 3 Intro
PHRs are not an end in themselves, but just management skills and access to information The Health Foundation has funded a one of the tools needed to achieve the real about their condition. They also need skilled number of major demonstration projects prize - a step change in the extent to which support and motivation from their clinicians, in this area - including the myRecord 1 people are able to manage their own health and healthcare systems that operate very project and Co-creating Health. For a fuller effectively and a change in the relationships differently from those we have today. discussion of self management, and how 2 between citizens and their clinicians and Interventions to support self management PHRs fit in, visit their website at the NHS. Around 15 million people in the include: www.health.org.uk. UK live with a long-term condition4 such
Information 3 as diabetes, depression, heart disease or Care planning Self management support can be arthritis, and this number is expected to Goal setting viewed in two ways: double by 2030.5 Long-term conditions as a portfolio of techniques and 4 account for 70% of NHS spending.6 We know Decision aids tools that help patients choose that people with a long-term condition, or Self-monitoring 7 healthy behaviours; and
at risk of developing one, can improve their Education and peer support. 5 health and quality of life by taking a more as a fundamental transformation of PHRs can support the delivery interventions active role in their own care.5 the patient-caregiver relationship - but this needs to be designed in to into a collaborative partnership.8 Engaged patients feel more confident and systems from the outset. Offering simple 6 empowered, have better clinical outcomes ‘access’, the ability to view health records and make more appropriate use of health passively online, will not deliver the full services. But to do this they need self- potential of PHRs. 7 Feedback 4 www.dh.gov.uk 5 Co‐creating health: Evaluation of first phase. London, The Health Foundation, 2012. www.health.org.uk 6 Long term conditions compendium of information: third edition. Department of Health, 2012. www.dh.gov.uk 7 Evidence: Helping people help themselves. London: The Health Foundation, 2011. www.health.org.uk 8 Bodenheimer T, MacGregor C, Shafiri C.Helping patients manage their chronic conditions. California: California Healthcare Foundation, 2005. www.chcf.org
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What is record access? Health records - the current In general practice, where IT development has been largely bottom-up and clinically Intro Under the 1998 Data Protection Act, everyone situation led, the implementation of electronic has a legal right to ask to see their NHS or In the NHS, each individual provider, such records has moved ahead of secondary private health records, using a Subject Access as a GP practice or hospital, tends to store
care. Paperless records are now the norm, 1 Request.9 In practice, this means applying to information in their own systems, with little or and correspondence from other parts of see the paper versions from each practice, no sharing with other providers. the system is routinely scanned and held hospital or care provider separately. Access
Over the past ten years, the NHS in England, electronically. There is widespread use of 2 may be denied if it is considered that it would Wales and Scotland, and Health and Social clinical coding systems (such as READ and cause serious harm to the patient,10 and Care in Northern Ireland, have attempted SNOMED) that allow information from patients will often need to pay to see a copy.9
to develop the IT infrastructure to provide records to be extracted and summarised. 3 But things are changing. As more and more universal, structured, person-based electronic The potential for allowing patient access health providers replace paper records records - see boxes 4 and 5 overleaf. In to records is there. Some of the major GP
with electronic versions, the aim is to allow England, the National Programme for IT, begun software companies, such as EMIS, already 4 patients to access these electronic records for in 2002, was commissioned to connect over have systems up and running. Other suppliers themselves. 30,000 GPs in England to almost 300 hospitals (including TPP) are conducting pilots.
and give patients access to their personal Elsewhere in the NHS, comprehensive 5 health information. Although the programme electronic records remain an aspiration. Many delivered some significant improvements, places, particularly hospitals and social care
such as a national secure broadband network settings, still rely on paper records for all or 6 and ‘Choose and Book’ (to choose hospitals part of care, alongside numerous electronic and clinics and book appointments online), systems for specific functions, which may or it is now being dismantled in favour of a may not integrate with each other. Staff have 7 decentralised approach to allow for local to wait for data to move around the system decision-making and innovation. by fax and post; it is very difficult to know Feedback
9 NHS Choices www.nhs.uk 10 Confidentiality. London: General Medical Council, 2009. Endnotes, paragraph 16. www.gmc-uk.org
Page 11 Chapter One www.pifonline.org.ukwww.pifonline.org.uk Chapter One: Putting record access into context how and when a patient is treated elsewhere; and it is virtually impossible for patients National progress on record access Box 4 Intro to see all information held about them, let England Scotland alone have any control over what is kept in The Government has pledged that all NHS There are two GP software companies which
the record and who sees it. This remains a 1 patients will be able to access their personal cover the whole of primary care and both major barrier to online record access beyond GP records online by 2015. This will be offer a module that allows patient access primary care. commissioned locally rather than through to their records. However, there will be no The exceptions to this are patient-held national procurement. However, at present, mandatory national roll out of these. The 2 records - see box 6 overleaf. For years these only some 100 GP practices are offering online Government is developing a citizen e-health have been used routinely in a few settings record access to patients so there is a long way strategy which will include (probably limited) 3 where patients are looked after by multiple to go. Meanwhile, in secondary care, access is record access. providers. Generally, the patient is the limited to specific schemes and pilots. Northern Ireland custodian of the notes and has free access to
Wales There is a new Electronic Patients Records 4 them, but data is added only by professionals. Patients are being offered a ‘My Health system being put in place. The software Other cases, such as the RedBook, allow the Online’ account. These have been rolled provider was announced recently and the custodian to add updates too. out to 21% of general practices so far. first benefits are expected in the next year 5 Patient-held records demonstrate how, by Initially patients will be able to order repeat or so. The project is seeking to link up Trust patients controlling their own data, no single prescriptions, book appointments and records (including diagnostic testing) with provider can prevent others from using the update personal information. Subsequent out-of-hours services and GP systems. 6 data, and records can be truly integrated. phases will allow record access within about However, patient access to GP records is not two years. There are no plans at the moment part of the remit.
to offer access to secondary care records. 7 Feedback
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Summary records for emergency care Box 5 Examples of patient-held records Box 6 Intro
Around the UK, work is continuing to create an Maternity notes are kept at home by The new End of Life Care Co-ordination online record for each NHS patient, summarising women and used by GPs, midwives and Record Keeping Guidance11 includes their prescriptions and any allergies or adverse hospitals. Women can add their own the option of the record of a patient’s 1 reactions to a medicine. birth plans and other information. preferences or decisions being kept on paper in the person’s home or ‘current’
These records will only be used by health 2 professionals at the point of emergency or out- home. of-hours care. Access is available throughout Gypsy and travellers health records are
Scotland (Emergency Care Summaries), and is being piloted in a number of sites to 3 being rolled out across Wales (Individual Health ensure that members of the travelling Records), Northern Ireland (Emergency Care community have their full record 12 Records) and England (Summary Care Records). wherever they go. 4 The ‘Copying letters to patients’ initiative, launched by the Department
The Red Book is a personal child health of Health in 2002, aims to make 5 record, kept by the parent and used patients routinely copied in to letters by them and any health professional written about them between health involved in the child’s care until they professionals, although the scheme is 6 reach five years old. not mandatory. 7 Feedback
11 End of life care co-ordination record keeping guidance. National End of Life Care Programme, March 2012. www.endoflifecareforadults.nhs.uk 12 Sussex Traveller Health and Wellbeing Team. www.gypsy-traveller.org
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‘I signed up to a [PHR] service so that I information raised a lot of questions in Intro “could see both my records and those of my my mind even if the doctor decided there children. It was useful to have my medical was nothing to discuss. And people end history in one place, and it was interesting up with a lot of information that they may 1 if you understood them and knew what not properly understand for which they you were looking for. I consider myself may start seeking answers in the wrong educated enough to understand most of place, and about which they may worry 2 the terms in a medical report. Still, I found unnecessarily. myself needing explanations for things that A second risk is obviously confidentiality were measured differently from what I was and safeguarding patient data. Would I 3 expecting, or for things that were out of sign up for something similar over here range (did I need to worry?), or simply for in the UK? Yes, as it would allow me to do
what to do next. the practical things and see/have my own 4 The [health provider] took the view that records without having to go to the doctor’s they’d only set up a meeting with you to practice, should I need them.’
discuss the results if there was anything Healthy woman, just returned from living 5 to worry about but, in a way, having the in the US 6 7 Feedback
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Key features of a shared Personal Health Record Box 7 Intro
1. Private and secure 4. Comprehensive information Withdraw that access to the record at any Patients and other users authenticated Incorporates all relevant information from time and still keep their copy 1 properly all the electronic health records about the Add to, and annotate, the record Clear limitations on identifying information patient held by any health or social care Download or export the information to organisation held within the record another device or format 2 Full access to health records, medical Best practice system security They may also include functions such as: notes, current and past prescriptions, 2. Transparent Setting agendas for appointments in
test results 3 Audit trail of who has viewed and edited advance Secure messaging between patients the record Completing Patient Reported Outcome and health professionals Measures and sharing other data with 3. Current 4 Transactions such as ordering repeat healthcare professionals Constantly synchronised with the health prescriptions or booking appointments and social care providers’ electronic health Tailored education or support
5. Controlled by the patient/citizen - 5 records (which remain their property even programmes, care plans, treatment goals, who can: if the patient withdraws access to the reminders. shared PHR) Decide who to share the record with
(including healthcare professionals, carers 6 and others) Consensus of experts convened by PiF, 2012 7 Feedback
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From record access to shared Figure 1 - Stages on the road to full Personal Health Records14 Personal Health Records Intro PiF has defined the essential features of a full shared PHR - see box 7 on previous page. 4 Full PHR: fusion of personal e.g. Patients Know Best
health information and work with Great Ormond 1 There are several levels of access to records Street and St Mark’s clinical record along the road to this end point. Figure 1 Hospitals outlines what these are and gives examples 3 Real‐time, unfiltered 2 of solutions currently operating at each level - read and annotate access e.g. Patients Know Best record given as case studies in Chapter 7.
It should be noted that some delay in 3 parts of the record being made accessible 2B Delayed or filtered may be a good thing: the Record Access read and annotate access e.g. SLAM myhealthlocker
Collaborative guidelines recommend that 4 potentially alarming test results should be 2A communicated face to face, before patients Real‐time, unfiltered,
e.g. PAERS system for accessing GP records 5 are able to see them in their record.13 read‐only electronic access
1B Delayed or filtered 6 read‐only electronic access e.g. Kaiser Permanente 7 1A Delayed or filtered read‐only paper access e.g. Patient applies for paper copy of their medical record Feedback
13 Record Access Collaborative. Enabling patients to access electronic health records. Guidance for Health Professionals. London: RCGP, 2010. www.rcgp.org.uk 14 PiF and Professor Iain Buchan, June 2012 [personal communication].
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Tethered PHRs Untethered PHRs joining up the data into a full shared PHR. A distinction can be made between tethered Given the disjointed nature of electronic Feedback Untethered 7 6 PHRs are 5 at an early 4 stage 3 of 2 1 Intro and untethered records. A tethered record is health records in the UK, shared PHRs in their development in the UK, but two providers, a subset of data held by a specific healthcare fullest form are likely to be provided through Microsoft HealthVault and Patients Know provider, such as a GP practice. The user can untethered solutions. An untethered PHR Best, have platforms which can offer them. access and update their data with varying is controlled by the individual rather than degrees of control. Renal PatientView and an institution. Typically, it will be provided the PAERS GP record access system are UK through a web-based platform which offers ‘I think the idea of a record you examples. By definition, a tethered record the patient an online space to keep data about “can correct, fill in blanks, submit will not be comprehensive - only information their health - including data generated by the your own readings and interactively held by one healthcare provider will be patient themselves - and synchronises with manage your own condition (graphs included - but if this is the GP practice, this the patient’s electronic health records held by against target of blood pressure will include at least the most significant different institutions (see Figure 2 overleaf). etc.) has great potential... If you can correspondence and test results from other This requires the patient and the healthcare link families round the back to allow providers. institutions’ permission and relevant tracking of genetic conditions then the potential is enormous.’ The tethered record can also enable a system interoperability protocols to be in place. that is interactive, allowing a closer and Untethered records offer the potential for GP responding to DH Consultation on more personalised relationship between the patients to share data from one healthcare Record Access Support Needs 2012 citizen and the NHS. institution or professional with another, including non-NHS providers - thereby
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Beyond just offering patients the ability Figure 2 - The ‘untethered’ PHR platform to access and add to their records, both Intro untethered and tethered PHRs offer a Hospitals vehicle for the development of innovative
applications and add-ons to enable patients Patient 1 to track and interpret their data, and Organisations & manage their health proactively. People can Other Information GPs Providers connect monitoring devices, such as blood 2 pressure monitors, weighing scales, blood sugar monitors and heart rate monitors, to PH their computers and upload data directly ed R 3 er pl th a into their record, helping them to increase e tf h o t r m their personal fitness or monitor a long-term Laboratories n Pharmacies
U condition, and share this data with health 4 professionals. PHRs also have the potential to play an important role in telehealth and 5 telecare. The Whole System Demonstrator programme included elements of record Health &
Application 6 Fitness Device access in most trial sites and has shown Providers Manufacturers significant benefits.15 7 Feedback
Social Care Providers
15 3 Million Lives www.3millionlives.co.uk
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Shared social care records the definition of a PHR. But an ACSR is not Compared to PHRs, it is likely an individual thought of as a single, physical record. Rather, will be far more involved in producing their Intro Just as there is scope in the development of it is conceived as a virtual record, distributed ACSR, creating plans and commissioning health records, there is great opportunity across a range of systems and infrastructures. services for him or herself. The ACSR will to similarly develop social care-related
include all the relevant information about 1 information. Healthcare informatics is now a person that relates to their care, some of being recognised as a major contributor which they hold and some of which is stored to care delivery and although this is less
by the various agencies and providers who 2 developed in social care, the two will need work with them and support their care. to evolve in parallel. Social care records But it should all be accessible as if it were have particular requirements and a wide
contained within a single system. 3 remit covering a range of contributors and providers. The systems and information The ACSR needs to be accessed by three requirements can therefore be very different stakeholders: 4 from those for clinical health services. the individual (who needs the record, Social care records are very broad: they are generates some of it, and may want to share it) about the person and those around them, 5 giving a bigger picture that can include practitioners (they must record and plans for the future. evidence their practice)
The concept of an ‘Adult Care Support organisations providing services (who 6 Record’ (ACSR) has been developed to will want to record finances, care, service address these requirements in adult social transactions and planning, and decision- care.16 Similar developments are happening making). 7 in children’s services. The ACSR is similar Feedback to the PHR and encompasses part or all of
16 ASCR framework guide. The core adult care support record. Strategic Improving Information Programme, February 2011. https://nascis.ic.nhs.uk
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Information needs to flow dynamically that they may wish to restrict access to some may overlap where agencies provide joint around this triangle, supporting a range of component, such as financial components or services and support. The organisation Intro purposes rather than being held as static specific sensitive issues. For a minority, such focus also includes parts of the record that ‘facts’ in a single box. So, for social care, it as those with reduced capacity for decision- it may not be appropriate to share with the
is important to consider using integrated making, the holistic view of their record may individual. Access and control of this data 1 technology that shares information, and be allocated to a carer or advocate. needs to be strictly managed. presents it in different ways to different The ACSR will have two aspects. The person For most people going through life, PHRs people for different purposes. focus will have information relating to an are appropriate and relevant; a smaller 2 Relatively few users will be able to view individual, to be accessed, updated and used proportion of people will also need an ACSR - a complete ACSR. Usually access will be by him or her (or their advocate) to identify recording additional data and services - that restricted to those parts of the record and manage care. This may be linked to they can access and share with a much wider 3 relevant to the user’s role. This includes other customer and health records, but the care support team. the person who the record is about as, social care component should be identifiable very occasionally, there may be some and access controlled though appropriate 4 components where access by that individual governance. It may include, for example, may not be appropriate - for example, care and support plans, end-of-life plans, when there are safeguarding issues, mental personal relationships, the person’s finance 5 health concerns or third-party identities. In data and service transactions. general, the person that the record describes The organisation focus is about the 6 should be aware of who has access to any information relating to an organisation’s component of it, and be able to restrict or interactions with the individual, to monitor withdraw that access. effectiveness and efficiencies of service, 7 For most people, it is probable that they and for safeguarding the individual and the
will be the one who will retain the most community. There may be more than one Feedback complete view of their record, and it is likely organisational view of data, and the views
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Conclusion Intro The UK is just starting out on the road towards full shared PHRs for all. There is tension between the ideal, defined here, and the more limited, but achievable, levels of 1 access which are the immediate aim in the new Information Strategy for England, and elsewhere in the UK. The following chapters 2 of this guide describe some of the benefits and challenges to realising the full potential of PHRs, and outline essential steps which 3 are needed to turn the vision into reality. 4 5 6 7 Feedback
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There is also concern that not everyone is ‘I wouldn’t want everyone I share my record ‘It is dangerous not knowing your IT literate or even has access to a computer, Intro with to know if I was thinking about a living own medical records. A PHR would help.’ although with the widespread use of smart “ “will. Or who I want to share my records with.’ PiF patient consultation phones the problem of internet access 17 PiF patient consultation
is diminishing. But, in pilots, there are 1 examples of elderly people embracing new Public reaction to PHRs technologies, sometimes prompted by
the offer of record access. Younger people, 2 When people are introduced to the concept many of whom already live in a social ‘I fell down the stairs and broke my shoulder. of shared PHRs, reactions range from media world, may find online access to It resulted in 8 visits to the fracture clinic which enthusiasm and excitement to scepticism records a natural progression. Also, patients “meant 8 letters to my doctor, none of which I 3 and concern. with long-term medical conditions may received copies of, so that would have meant 8 Of those who took part in the consultation leap at the chance of engaging more easily appointments at the GP’s to find out what the event held to develop this guide, many with health professionals. These groups letter said, and 8 telephone calls. So [seeing 4 eagerly welcomed advantages such as may be more likely to engage quickly with the letters online] saved me 11 hours. For the seeing exactly what is held in their record, this new model of healthcare and others doctor, it saved 8 appointments. They estimate accessing test results, and conducting will catch up. that the GP appointment costs £25 a time, so 5 transactions such as booking appointments it actually saved the NHS £200. And not only and ordering repeat prescriptions. that, because I wasn’t using those appointments
there were 8 other appointments available for 6 However, people also raised concerns about people that really did need to see a doctor.’ security risks and third parties accessing records without consent. And while some 60-year-old woman and keen PHR user 7 can see the benefits of sharing a record with,
for example, family and carers, some people Feedback want and need to be able to pick and choose who sees what.
17 Patients Know Best blog: blog.patientsknowbest.com
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Potential benefits to patients Improved health In a survey by HealthSpace, the features selected by respondents that were most Intro There are a range of potential benefits of PHRs give patients greater access to a wide important to them centred on easier personal access to records. A PHR can be range of credible health information, data 18 management and ownership of their helpful in maintaining health and wellness, and knowledge. This allows them to:
own health, improving access between 1 not just treating illness18 and how it is used achieve a greater understanding of health themselves and the NHS, and ensuring the will vary depending on an individual’s needs. and illness19 NHS is fully informed about them and their 18,19 Already some patients are saving time by be more involved 23 needs. It also indicated that an online 2 20,21 conducting online transactions such as make informed choices and judgements health portal would be used most regularly ordering repeat prescriptions and making improve their health and manage their by people with long-term and chronic health appointments. But as access is given to 18 conditions. conditions, and carers. 3 the records themselves, the wider benefits By seeing advice in ‘black and white’ health become apparent. messages are reinforced and patients
are more likely to make real changes to 4 behaviour - such as their eating habits and activity levels.22 5 Through better sharing of information between primary, secondary and social care, patients may experience more seamless care 6 and be better able to manage the transition between services. 7
18 Tang PC, Ash JS, Bates DW et al. Personal health records: 20 Guidelines for electronic record sharing with patients. Record Access 22 Fisher B, Bhavani V, Winfield M. How patients use access to their definitions, benefits, and strategies for overcoming barriers to Collaborative, 2010. www.record-access-collaborative.org full health records: a qualitative study of patients in general Feedback adoption. J Am Med Inform Assoc 2006; 13 (2): 121-6. 21 Abidi SS, Goh A. A personalised healthcare delivery system: practice. J R Soc Med 2009; 102 (12): 539-44. www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov pushing customised healthcare information over the www. Stud 23 HealthSpace Patient Survey Report, January 2010 [unpublished]. 19 Record Access Collaborative. Enabling patients to access electronic Health Technol Inform 2000; 77: 663-7. www.ncbi.nlm.nih.gov health records. Guidance for Health Professionals. London: RCGP, 2010. www.rcgp.org.uk
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Improved trust Online access to records also offers the Ownership
Patients able to access their GP records chance to share records with whomever There is intrinsic value in the citizen having Intro feel reassured that their doctors are a patient wishes. This could be with close the health record. For example, at Great communicating fully and that nothing is family members and carers, to enable them all Ormond Street Hospital, control of the record
hidden. This reinforces trust and confidence to understand diagnoses, treatment options can be handed over to the patient after their 1 in GPs.24 and care. Information can also be shared 16th birthday. This facilitates a more efficient outside the immediate health setting - handover to adult services; it also shows the Better communication 26 for example, to private providers or when patient that they are now responsible. 2 Access to records has also been shown travelling abroad. to provide reassurance and clarify poor Accessibility communication, enabling patients to better 3 understand the dialogue with professionals Electronic record access is an opportunity and its consequences.24 to improve access for patients, especially 25
those with disabilities. People with visual 4 Patients accessing their health records can impairments can use assistive-technology make their contacts with general practice to help them read the records. Those with and hospitals as efficient as possible.25 For
hearing problems can go back and see what 5 example, reviewing the record at home has been recorded. People with English as after a consultation can assist memory and a second language can check the details understanding, and improve adherence to
of their care with English speakers and use 6 treatments.24 translation software if necessary. 7 Feedback
24 Fisher B, Bhavani V, Winfield M. How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med 2009; 102 (12): 539-44. www.ncbi.nlm.nih.gov 25 Record Access Collaborative. Enabling patients to access electronic health records. Guidance for Health Professionals. London: RCGP, 2010. www.rcgp.org.uk 26 www.guardian.co.uk
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Digital divide
‘A lot of the local BME [black and ‘I nearly fused the power [sic] in Intro eHealth literacy is the ability of people to use minority ethnic] population travel a lot. writing to state categorically that emerging information and communications “They will often have tests repeated in “neither I nor my wife wished our details technologies to improve or enable health India or Pakistan and come back with uploaded onto any sort of database, 28 and healthcare. As people with high 1 the results and ask for them to go in especially one as leaky as the NHS.’ eHealth literacy use technology in a more their notes. They want lots of test results. Posted on bigbrotherwatch.org.uk sophisticated and comprehensive way, They would feel more reassured if they inequalities become greater and the people at 2 could see their records. Google Translate the bottom of the digital divide benefit less.28 would be very good for this group too. In the UK, there are 9.2 million adults who A lot of PCTs are supposed to offer Challenges of PHRs have never accessed the internet, including 3 free records translation services when Despite the likely benefits, some people 60% of those aged 65 and over.29 patients come from abroad and bring do not embrace the concept of using an
their records, but in reality it doesn’t Low literacy 4 electronic health record, and others see work well.’ There are low levels of basic literacy and potential problems. GP from South East London numeracy in some parts of the UK, and over 30 A study in the US to look at barriers to PHR 1 million illiterate people in England. For 5 adoption found that the primary problems example, over half of older Bangladeshi and were linked to the digital divide, low literacy Pakistani women, and 20% of older men, are 27 and cultural differences. illiterate in any language.29 6 7 Feedback
27 Bagchi A, Moreno L, af Ursin R. Considerations in designing 28 Neter E, Brainin E. Health Literacy: Extending the digital divide to 30 The skills for life survey. Department for Educations and Skills, personal health records for underserved populations. the realm of health information. J Med Internet Res 2012; 14 (1): e19. 2003. www.education.gov.uk Mathematica Policy Research; Issue Brief, April 2007, number 1. www.ncbi.nlm.nih.gov www.mathematica-mpr.com 29 The power of information - equality analysis. Department of Health, 2012. www.dh.gov.uk
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through the use of translation software, or the clinician’s responsibility to check that there
through patients using bilingual relatives or is no coercion as part of the access set-up and Intro friends to help them understand the contents. consent process.
Security concerns Apathy or reluctance 1 Medical records hold extremely personal Not everyone, particularly those who are information. Details disclosed, maliciously young and healthy, see the relevance or accessed or lost represent serious advantages of accessing their own record. 2 infringements on someone’s privacy. Others may not have the time or skills needed In a survey by HealthSpace (see case study on to engage with record access. Some may feel
obliged to engage with record access just to 3 Language barriers page 54), a final open-ended option to add comments resulted in 26% of people saying continue to access services, and may resent Cultural barriers, particularly language barriers, they were concerned about security and risks the burden this places on them. can prevent PHR uptake. In the US, PHR use is of confidentiality breaches through record 4 Concern over record content negatively correlated with low health literacy access.32 and cultural differences.31 Language barriers Health records may contain particularly Coercion may mean that patients are not aware of, or sensitive information, or sometimes unknown 5 are not recruited into, PHR schemes. Or they There are instances when individuals are information, so there is a risk that some people may not understand the information they forced to share their record with someone may be distressed by what they read. People
find in a record. This is a particular problem if they don’t want to - for example, if the patient may disagree with what is written. And some 6 interpreters are in short supply. But provided is a child or an adult in an abusive relationship. may not understand the terminology used, the health institution can provide these There may also be situations when family which could cause confusion. There is also a patients with access, PHRs in fact have the members or carers insist on accessing or even risk of misinterpretation - for example, with 7 potential to help with language barriers either annotating a vulnerable person’s record. It is test results. Feedback
31 Bagchi A, Moreno L, af Ursin R. Considerations in designing personal health records for underserved populations. Mathematica Policy Research; Issue Brief, April 2007, number 1. www.mathematica-mpr.com 32 HealthSpace Patient Survey Report, January 2010.
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Further information to support understanding of records Box 8 Intro
It is inevitable that people will come across enable patients to choose which external information within their health record that information provider they want to link with they will not understand. It is therefore vital their record, offering the most relevant 1 that they have quick links to other sources information for them. of information. The new Information
Patients Know Best annotates test 2 Strategy for England includes a new, single results using explanations from the Royal ‘portal’, provided by Government from 2013, College of Pathologists, as well as allowing as a link to trusted information on health,
individual clinicians to link to local and 3 care, support and public health. international information sources. The following are examples of web-based Renal PatientView provides links to information which can support patient external sources such as patient groups, 4 understanding of their health records: hospital websites and international www.patient.co.uk is the information professional organisations. 5 service provided by EMIS for EMIS’s Patient NHS Choices is a national resource Access and PAERS iPatient. This gives providing information on conditions, information on a wide range of conditions
treatments and healthy living. It has links 6 and medicines. to medicine guides and the evidence- The PAERS/EMIS system automatically links based ‘Map of Medicine’ used by doctors to
READ codes and test results in the record guide clinical decisions. It is paid for by the 7 with relevant patient information leaflets Department of Health and any PHR supplier
in patient.co.uk. This makes understanding is free to link to it. Feedback far easier. PAERS/EMIS iPatient will soon
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NHS Care Record Guarantee Box 9 Intro
The Guarantee33 states that the NHS will The Guarantee also states that the NHS will make sure, through contracts and staff make sure records are held securely and training, that everyone who works in or on only make them available to people who 1 behalf of the NHS understands their duty of have a right to see them. If it is found that confidentiality. All organisations providing someone has deliberately accessed records care for the NHS, or on its behalf, must without permission or good reason, the 2 follow the same strict policies and controls. NHS will inform the patient and take action. 3
‘Switching on patient access alone is
not enough, and potentially detrimental, if 4 “appropriate support structures are not in place for patients so that they understand and
know how to use the information. This support 5 structure must be in place, including a proper consent process.’ 34 6 7 Feedback
33 NHS Care Record Guarantee. National Information Governance Board, 2011. www.nigb.nhs.uk 34 Summary report - second phase. NHS Future Forum, 2012. http://healthandcare.dh.gov.uk
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Possible solutions Concentrate on vulnerable and Be vigilant for potential coercion. Third- marginalised groups - such as those with party information may need to be Intro Despite the challenges, misconceptions and chronic mental health conditions - who anonymised - for example, when someone concerns, there is much that can be done to have measurably worse health outcomes with an abusive alcoholic husband wants encourage patients to embrace record access. 36
across all areas. the GP to help him, but does not want to 1 Many of these solutions are being explored by be identified.38 the myRecord project, funded by The Health PHR suppliers can:
Foundation. Actively participate in public awareness Issue guidance for patients on how to
access their records safely. The Department 2 Maximise enrolment campaigns to convince patients of the benefits of PHRs, and educate and support of Health and the British Computer Society Healthcare providers and Government can: patients to use PHRs to the full. have commissioned the development of Actively promote record access, rather this guidance and aim to publish it at the 3 than just making the service available Reassure end of 2012.39 and waiting for patients to opt in. A year- Healthcare providers and Government can: Reassure users of the support and further long programme to encourage patients Pay attention to informing and involving information available to them - see box 4 to use Renal PatientView tripled patient members of the public, to increase public 8 on page 27 - and highlight positive registration when doctors: encouraged confidence.37 feedback from patients using PHRs. 5 enrolment; introduced the portal into Reassure users of the security in place to care planning; and promoted it in all protect their data and who accesses it. 35 correspondence to GPs. Highlight the NHS Care Record Guarantee - 6 Include marketing and support for minority see box 9. ethnic groups. Use secure and trusted brands, such as the
Provide users with ‘Questions you need to NHS. 7 ask before you engage’. Feedback
35 How-to Guide. Encouraging patient to use Renal PatientView. NHS 37 Health on-line: public attitudes to data sharing in the NHS. Scottish 38 Record Access Collaborative. Enabling patients to access electronic Kidney Care. www.kidneycare.nhs.uk Consumer Council, 2005. www.statewatch.org health records. Guidance for Health Professionals. London: RCGP, 36 Neter E, Brainin E. Health Literacy: Extending the digital divide to 2010. www.rcgp.org.uk the realm of health information. J Med Internet Res 2012; 14 (1): e19. 39 www.mynors-suppiah.com www.ncbi.nlm.nih.gov
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Maximise accessibility Balance security with ease of access - Intro Healthcare providers and Government can: robust authentication processes are essential but if these are too onerous they Ensure there are places, such as libraries can become a barrier to take-up. The low and clinics, where those without computers
numbers of HealthSpace users was, in part, 1 can go to access their records. blamed on cumbersome registration and
Provide training and support to help log-in procedures.41 people understand PHRs and know how to Introduce PHRs into national school 2 use them. This could be via: curricula to reinforce the role of these • Helplines records and the need for quality and
• Librarians, volunteers, clinic staff accuracy. 3 • Drop-in centres PHR suppliers can: • Step-by-step guides Include users in the design of services. 4 • Expert patient programs. Design technology that can be used by In the above-mentioned Renal PatientView those with low literacy. programme,40 the first step in increasing the Provide information sources alongside 5 use of the portal was to ensure there was record access so that users can cross-refer one single dedicated administrator trained when they come across anything they to register new applicants and to reset lost or don’t understand - see box 8 on page 27. 6 forgotten passwords. 7 Feedback
40 How-to Guide. Encouraging patient to use Renal PatientView. NHS Kidney Care. www.kidneycare.nhs.uk 41 www.ehi.co.uk
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Professionals’ reaction to PHRs
BMA position Box 10 RCN position Box 11 Intro Many healthcare professionals embrace the principles of shared PHRs. However, the The British Medical Association (BMA) The Royal College of Nursing (RCN) BMA’s response to the Information Revolution welcomes the intention to improve believes that all people, including consultation in 2010 - see box 10 - reflects the patient access to NHS data but points children and young people, should be 1 concerns of many about the practicalities, out that it is often subjective, and often supported to control and manage their the need to ‘protect’ patients from difficult generated to be of use to clinicians own health information according to information, and threats to confidentiality. rather than patients. For example, many their preferences and needs.42 2 There is also some debate about whether, in notes are recorded as aides-memoires to the long-term, PHRs will increase or decrease healthcare professionals - they could be 3 a clinician’s workload. unhelpful or even alarming to patients, for example, when a doctor speculates on a possible diagnosis, which is an 4 essential part of differential diagnosis. BMA response to Information Revolution
consultation (www.bma.org.uk) 5 6 7 Feedback
42 Personal health records and information management: RCN briefing. Royal College of Nursing 2012. In press.
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Real benefits for professionals record their agenda for a healthcare Figure 3 - The Personal Health Record joining consultation in advance) reduced emergency data from different parts of the health and Intro Information in health records is set 45 admissions, A&E visits and unscheduled visits social care system to become more readily available to to the doctor.43 And a study in the US found individuals. This will be an essential part of a
that access to health information through 1 healthcare paradigm shift for professionals PHRs means patients know more about their and consumers, towards informed, active health and take better care of themselves.44 patients involved in their care and decision- making (see box 3 on page 10). Increased opportunities for health 2 promotion and prevention Full PHRs have the potential to engage
‘We talk the language of being 3 patient-centred and empowering people in managing health risks, such as “ obesity and genetic risk factors, before they people. We have to live this out and become symptomatic.
move with the technology and allow 4 them to have this access. We need to Figure 3 shows how PHRs can potentially use patients more.’ Psychiatrist join up data from patients themselves with
health system data. Healthcare information 5 will start to accumulate at a much earlier stage of disease than is the case with Informed active patients current medical records. This creates an 6 Access to PHRs will potentially make patients opportunity for primary care and public more informed, empowered, engaged, health professionals to engage with patients
proactive and responsible. A Cochrane who have mounting health risks, but who 7 review of 36 trials found that self-monitoring might not otherwise seek primary care help. 45 and agenda setting (where patients can This has been called ‘pre-primary care’. Feedback
43 Gibson PG, Powell H, Wilson A et al. Self-management education 44 Consumer and Health Information Technology: A national survey. and regular practitioner review for adults with asthma. Cochrane California Healthcare Foundation, April 2010. Database of Systematic Reviews 2002, issue 3. 45 Buchan I. Informatics for Healthcare Systems. In Walshe K, Smith J onlinelibrary.wiley.com. (Eds.). Healthcare Management. Open University Press, 2011.
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Furthermore, when patients elect to share and the benefits of tools like patient agenda data with health professionals, they may forms.47 Incorporating these in online Intro find that this act of sharing helps motivate appointment booking systems could be a them to make the changes they need - for powerful way of improving the effectiveness
example, to lose weight or be more active. of consultations. PHR-mediated electronic 1 communication between patients and Improved trust health professionals can also improve the If patients are able to see what is recorded
efficiency of telephone and face-to-face 2 about them, and are able to enter their own communication.49 data, there is likely to be more trust between staff and patients.46 Communication can be improved across groups of care-givers, if given access (such as 3 Better communication extended family, carers, social care). As patients become more informed
There is also the potential to obtain 4 and a relationship of trust develops, meaningful and timely feedback from communication may improve and a stronger patients - on their symptoms but also on relationship between staff and patients may
consultations and treatments. 5 develop. Studies show patients are more prepared for appointments and ask more relevant questions when they have accessed ‘The only person who knows 6 their record.47, 48 “everything is the patient.’ GP There is substantial research exploring patients’ unvoiced agendas in consultations, 7 Feedback
46 Fisher B, Bhavani V, Winfield M. How patients use access to their 47 Consumer and Health Information Technology: A national survey. 49 Tang PC, Ash Js, Bates DW et al. Personal health records: full health records: a qualitative study of patients in general California Healthcare Foundation, April 2010. definitions, benefits, and strategies for overcoming barriers to practice. J R Soc Med 2009; 102 (12): 539-44. 48 Hamiton W, Britten N. Patient Agendas in Primary Care. BMJ adoption. J Am Med Inform Assoc 2006; 13 (2): 121-6. www.ncbi.nlm.nih.gov 2006; 332: 1225. www.bmj.com www.ncbi.nlm.nih.gov
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Better care Savings More accurate records
Evidence and experience shows that People with full record access may use By allowing a patient to see and annotate Intro allowing patients access to their medical services and consultations more effectively their medical records, it is likely that they will records improves quality of care, safety, and efficiently, focusing consultations on correct mistakes and omissions. This could 50 effectiveness and patient experience. what matters to them. They may also share reduce medical errors and repetition of 1 Having more data helps clinicians make data with clinicians, carers and family, tests and procedures. It will also reduce the better decisions51 and may increase the reducing the need to repeat stories or phone fragmented information that results from 50 effective use of treatments and medicines. the GP practice. different records kept with each provider. 2 Sharing records with professionals in A&E Efficiency savings may results from online Joining the eRevolution and in outpatient clinics makes care safer transactions, such as repeat prescriptions, and more efficient. With the push for local innovation, clinical 3 appointment bookings and sharing test commissioning groups (CCGs) have the 50 There is some discussion among doctors results. opportunity to develop systems that suit about whether improved outcomes are most local needs. Offering ground-breaking 4 likely in patients with modifiable behaviours - PHRs, and other attractive services such as for example, people with diabetes or electronic transactions and communication, cardiovascular disease. PHRs could have a will give providers a competitive advantage 5 big impact, but only if patients engage with and may attract patients and investment. them fully to realise the benefits. There is also an explosion of health applications, telehealth and telemedicine 6 and the opportunity to link PHRs into these developments. 7 Feedback
50 Patient record access: turning it on, sharing the learning. The Health Foundation, 2010. www.health.org.uk 51 Tang PC, Ash Js, Bates DW et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006; 13 (2): 121-6. www.ncbi.nlm.nih.gov
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Challenges for professionals during a randomised controlled trial in which Some clinicians think that all patient patients were able to access their medical records need checking for third-party and Intro Many professionals, even those that embrace notes and test results and send and receive sensitive information and ‘sanitising’ before the concept of record access, envisage electronic messages with clinic staff.52 a patient can have access. This presents a problems with how it would work in practice -
potentially huge workload, albeit a task that 1 Data from here in the UK, currently being see box 12, overleaf. could be done by a trained non-healthcare finalised, shows that online record access, Workload professional. One approach has been to only separate from booking appointments and
open up access to recent records, rather than 2 There is concern that patients accessing repeat prescriptions, can save substantial check back through years’ worth. records may result in more or lengthier numbers of telephone calls and appointments consultations. For example, patients may in primary care. It increases the capacity of need an explanation about what is contained primary care.53 A study in the US reported 3 in their record and what it means, and this that physicians found electronic messaging will take time. In fact, seven doctors in a an efficient method for handling non-urgent clinic for patients with congestive heart communication with their patients.54 4 failure reported no change in their workload Nevertheless, electronic communication is
a new way of working and requires some 5 ‘When discussing PHRs, 10% of fundamental changes in thinking and practice GPs react with ‘over my dead body’, that therefore generates concern. And if “5% say ‘yes’ immediately, the rest this becomes a common way of consulting 6 are convincible.’ it will need to be properly reflected in Record Access project manager reimbursement mechanisms, such as the
Quality and Outcomes Framework and the 7 Payment by Results tariffs. Feedback
52 Earnest MA, Ross SE, Wittevrongel L et al. Use of a patient- 53 Brian Fisher, personal communication accessible electronic medical record in a practice for congestive 54 Tang PC et al. PAMFOnline: Integrating EHealth with an heart failure: patient and physician experiences. J Am Med Electronic Medical Record System. AMIA Annu Symp Proc 2003; Inform Assoc 2004; 11 (5): 410-7. www.ncbi.nlm.nih.gov 644-8. www.ncbi.nlm.nih.gov
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Communication
GP attitudes to record access Box 12 Intro Health professionals may be resistant to the cultural changes and workflow changes that A recent study of 57 GP practices in None expressed concerns about litigation, come as part of record access. Some also worry England that had agreed to pilot a record citing confidence in the information held that their clinical interactions will be distorted if 1 access system revealed some of the barriers in their systems, although there was patients can see what they are writing, or that they to uptake.58 some uncertainty about their position if may be exposed as uncertain or prone to error.55 record access were to reveal third-party However, others point out that they already write Of the 25 practices who had not adopted 2 information. While confidentiality was a with a view to record access and copying letters to the system, explanations included: a concern, inappropriate sharing by patients patients, and have done so for many years. Many lack of priority (in most cases it was was felt to be potentially more problematic professionals already turn the screen towards regarded positively but had simply not 3 than a technical breach. The potential for patients as they type, as a means of reaching a yet been implemented); lack of internal medical records to confuse or upset some shared understanding. agreement (e.g. only one GP advocate patients was also acknowledged. Overall, Experience shows that record access does in the practice); perceived workload (e.g. 4 time required to check records; patients these non-users supported the principle encourage honesty, which can lead to occasional of record access and regarded it as ‘an 56 seeking clarification); uncertainly about uncomfortable conversations with patients. inevitability’, but felt that more information However, experience also confirms that many operating procedures or likely benefits (i.e. 5 lack of information); lack of patient demand and support should be available to help patients welcome and expect openness, and that them prepare to deliver this service. health professionals are best advised to share these (e.g. service offered but no take-up); and options and decisions with patients.57 Record access security concerns. 6 is an additional route of information for patients but should not be a substitute for information communicated by professionals to patients.56 7 Feedback 55 Fisher B & Britten N. Patient access to records: expectations of hospital 57 Liaw ST, Radford AJ, Maddocks I. The impact of a computer generated 58 Pagliari C, Shand T, Fisher B. Embedding online patient record doctors and experiences of cancer patients. Br J Gen Prac 1993, 43 patient held health record. Aust Fam Physician 1998; 27 (suppl 1): access in UK primary care: a survey of stakeholder experiences. (367), 52-6. www.ncbi.nlm.nih.gov S39-43. www.ncbi.nlm.nih.gov J R Soc Med Sh Rep 2012; 3: 34. 56 Record Access Collaborative. Enabling Patients to access electronic health records. Guidance for Health Professionals. London: RCGP, 2010. www.rcgp.org.uk
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Potential liability survey in the US, higher-income individuals
One of the main barriers for one UK record are the most likely to have used a PHR. But Intro access pilot was fear that it would lead to lower-income adults, those with chronic more complaints and more work because of conditions, and those without a university
patients questioning the contents of their degree are more likely to experience positive 1 record.59 However, evidence suggests that effects of having their information accessible this is not a widespread problem in practice, online.60 and that barriers can be overcome if patients’ 2 concerns are recognised and understood, and ‘Clinical records... are terse, technical adequate support and learning provided at and patient unfriendly. In the absence an early stage.59 “ 3 of a clinical interpreter confusion, Poor uptake and outcomes apathy and (at times seriously dangerous) misunderstandings are
Providing the platform for PHRs isn’t enough. 4 certain to ensue.’ Patients must be involved in keeping their record up-to-date and learning how to use its Clinician comment in DH consultation on Record Access Support Needs 2012 full potential. 5 PHRs may be embraced disproportionately by educated, savvy patients, resulting in a widening of health inequalities. In a health 6 7 Feedback
59 Patient record access: turning it on, sharing the learning. The Health Foundation, 2010. www.health.org.uk 60 Consumer and Health Information Technology: A national survey. California Healthcare Foundation, April 2010.
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There is much that can be done to embed Royal College of General Box 13 Possible solutions this culture shift into UK healthcare. Intro Practitioners (RCGP) position61 Although the concept of PHRs has been Box 14 has tips on implementing a part of the health landscape for many patient-focused shared decision-making The clinical record is currently written years, implementation and widespread
programme. Also: 1 primarily for the health professional and for adoption has not happened. There has been communication between health professionals. It significant inertia and even resistance from The Royal Colleges, Medical Education is important that record access does not reduce some. However, there is much that can be England and universities can ensure this the effectiveness of these traditional functions. done to overcome barriers. new culture is firmly part of healthcare 2 It is important that health professionals still feel professionals’ curricula.63 Incentivise or legislate able to enter subjective thoughts into the record PHR champions can influence colleagues Record access should become standard 3 and this should be explained to patients when using peer pressure and ‘eminence-based practice.62 Legislation may be the only way enabling access. medicine’. This can even be employed that PHRs will be adopted universally. It has across specialities; for 30 years social The need for clinical accuracy for health been suggested by some that PHRs could be 4 workers have been keeping notes in a professional communication may also involve included in the GP contract, or as part of the way that they envisage patients seeing, highly technical information, which must not be Quality and Outcomes Framework, creating and they can share their experiences. The made less informative simply for the patient’s ease a financial incentive for patient enrolment. 5 of understanding. On the other hand, if the record widespread use of electronic records in is to become useful for patients, the clearer and Set PHRs in the context of the broader general practice means GPs are also more accepting of record access than those in more straightforward the writing the better. paradigm shift 6 secondary care. These can appear to be competing claims, but in There is gathering momentum for a shift many situations there is no conflict. towards more engaged informed patients. PHRs will be central to this, to augment trust 7 and improve safety - see box 3, page 10. Feedback
61 Record Access Collaborative. Enabling patients to access electronic health 62 The power of information: putting all of us in control of the health and 63 Summary report - second phase. NHS Future Forum, 2012. records. Guidance for Health Professionals. London: RCGP, 2010. care information we need. Department of Health, 2012. http://healthandcare.dh.gov.uk www.rcgp.org.uk http://informationstrategy.dh.gov.uk
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Manage concerns 64
Top tips for implementing self-management support Box 14 Intro Professional bodies, such as the British Medical Association and Royal Colleges, together need to 1. Create partnerships across the healthcare system. tackle legitimate concerns about the introduction
of PHRs. For example, guidance for professionals is 2. Frame self-management support within the wider context of national policy and 1 needed on: local needs. Practical tips and guidance to make sharing 3. Establish clear purpose, aims, objectives and desired outcomes. records easier 2 Myth busting - for example, patients can annotate 4. Spend time establishing your approach. but not edit their records 5. Ensure visible support from senior leaders. Engaging other staff and getting expectations 3 right - for instance, the status and attitude of 6. Implement the training programmes and service redesign in an integrated way. practice managers is crucial
7. Recognise that embedding self-management support involves individual journeys. 4 Ensuring that the system enables practices to hide non-coded data before a certain date. This 8. Provide support to individuals. protects the professionals from inadvertent 9. Promote personal stories of success from both lay people and health staff. 5 release of third-party data and old records having been written without patient access in mind Solutions to the problems of coercion. For 6 instance, enabling patients to share only the data they choose
How online messaging is to be properly managed 7 and monitored. There needs to be clearly defined
frameworks for professionals and patients, and it Feedback must be properly included in the reimbursement mechanisms.
64 Top tips for implementing self management support. Co‐creating health programme. London, The Health Foundation. www.health.org.uk
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Net benefit to the health system In this wider context, the main benefits of PHRs Checking records for sensitive or third-party have been identified as: information before giving access to patients. Intro As the earlier chapters of this guide have shown, PHRs have the potential to deliver Reduced face-to-face contacts between Taking all this into account, as the Department tangible health benefits. However, PHRs patients and healthcare professionals, and of Health Information Strategy Impact themselves are of limited benefit to healthcare more efficient consultations - for example, Assessment shows,65 even with relatively 1 systems. Their value is highest when they are because information which has already been conservative assumptions, there will be a implemented in the context of other, related recorded does not need to be repeated net benefit to society from the wholesale developments: Improved health outcomes through earlier implementation of these changes. The 2 A step change in the extent to which diagnosis and reduced errors Assessment values the net benefit in England at patients play an active role in maintaining Net savings in administration costs, including more than £5 billion over 10 years. The record and improving their own health the cost of the paper transfer of information access elements of the benefit relate to GP 3 records only, and are based mainly on a pilot A move away from paper-based health and telephone calls. study, yet to be published.66 records towards integrated electronic
There are a number of costs to implementing 4 records, where information is recorded only PHRs, including: Evidence from the US shows the potential benefits of PHRs to purchasers of healthcare once, at the point of care Record access software, which may be part include lower costs of managing long-term
New technology used to reduce and of an electronic health record system, but 5 conditions, lower medication costs, and lower streamline consultations, including the use may also be provided through ‘untethered’ health promotion costs.67 The greatest area of of telemedicine, and telephone and online platforms (see page 17) benefit is likely to be in the management of long-
consultations 6 Identification at initial registration and term conditions, where lifetime costs are highest. Electronic transactions, such as ongoing authentication processes The US’s 2009 stimulus package includes a appointment booking and repeat Training for administrative and clinical staff $36.5 billion nationwide investment in prescription requests. 7 Training, support and information for patients electronic health records because they believe about how to use the system, including an
they will improve health and save money - see Feedback ongoing ‘Help’ facility box 15 on page 44.
65 The power of information impact assessement. Department of Health, 2012. www.dh.gov.uk 66 Fitton C, Fitton R, Fisher B et al. Examining the business case for Electronic Health Records Assess in two English General Practices. Publication date and journal yet to be decided. 67 Tang PC, Ash Js, Bates DW et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006; 13 (2): 121-6. www.ncbi.nlm.nih.gov
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The Information Strategy for by the Future Forum.70 This will include England guidance on issues such as third-party Intro information, data security, education and England’s new Information Strategy, The development for patients and clinicians, and power of information,68 puts an ambitious
technical standards that need to be in place 1 aspiration for record access in the opening so that records can be accessed safely. chapter. It restates the pledge that everyone will have access to their GP records by 2015, To pave the way for PHRs, which involve along with the means to book appointments the joining up of data, there is a need for 2 and request repeat prescriptions electronically. national information standards to enable A timetable for access to records beyond interoperability across health and social primary care is not specified. care systems. The Information Strategy for 3 England defines a modular approach to The Strategy highlights important pieces of developing these standards. work needed for the widespread adoption of 4 The Strategy also gives a combined role record access. ‘Supported by guidance, to the Department of Health, National Dame Fiona Caldicott is leading a review commissioners should be able to Commissioning Board and Public Health “ 5 into the balance between protecting commission the local provision of England to create an overall roadmap to confidentiality and the sharing of health information, and the support to use ensure the implementation of standards to and social care information.69 it, at stages in the development of
enable data sharing. 6 our care journeys so that information A group led by the RCGP, including the Nevertheless, the Strategy firmly avoids becomes to be seen as an integral and National Commissioning Board, BMA and central direction and is clear that local necessary part of every service.’ 68
patient organisations, has been convened 7 commissioners and providers will need to to develop a plan to roll out access to take a lead.
patient records by 2015, as recommended Feedback
68 The power of information: putting all of us in control of the health 69 National Information Governance Board for Health and Social and care information we need. Department of Health, 2012. Care. Press release, 2012. www.nigb.nhs.uk/ig-review http://informationstrategy.dh.gov.uk 70 Summary report - second phase. NHS Future Forum, 2012. http://healthandcare.dh.gov.uk
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Making PHRs a reality The risk is that, over the next few years, both 2. Create the business case for clinicians, uptake, and the difference made to health providers and commissioners Intro There has been enormous progress in policy outcomes, will be seen as poor, and the terms on record access in recent times but, Like any change, deploying PHRs requires detractors will win the day. despite this, there are concerns that providers time and effort, with an associated cost. will pay lip-service to the principles and do PiF’s view is that four areas need particular The business case around record access to 1 the minimum they can to ‘tick the record attention in order to avoid these risks. date is based on a small number of pilot GP access box’, rather than offering full PHRs. The practices, where the clinicians are enthusiasts.
1. Articulate the benefits clearly to patients 2 figures quoted on the extent of access today Clinicians and healthcare organisations are and the public need to be read with caution: some 60% of likely to remain sceptical about the benefits GP practices today have the technological Patient interest in health records is growing, of PHRs unless fully-costed business cases capability through their electronic health but take-up is still very slow. For example, in and deployment examples are developed. 3 the myRecord project, practices are typically record systems to offer access, but in fact 3. Undertake baseline evaluation fewer than 0.8% of practices do (around 100 recruiting just 1-2 patients per practice per
From the beginning, commissioners and 4 practices in England71), and in even the most week. providers must integrate empirical systematic successful of these, only 14% of patients Citizens will need to be involved in setting evaluation and learning. Consideration should are registered for access72 (and a smaller up the systems that will answer their needs be given now to the key metrics that should 5 proportion still will be using it regularly). There and particularly the needs of those with low be expected to see change over the next is therefore a mountain to climb to achieve the health literacy and particular conditions. decade as PHRs are deployed, and baseline 2015 pledge - i.e. access is not the same as use. A big marketing campaign will be needed to data should be collected so that progress 6 showcase the benefits to different groups of As for the full shared PHR - linking records can be tracked. This must include patient- individuals. Patient organisations will have from different institutions with patients’ own orientated outcomes including quality of life, a major role to play in championing the data - there are almost no examples in the UK health literacy, and activation levels. 7 to date, and it is clear that this will not be the benefits of and promoting uptake of PHRs. focus of the health system until after 2015. Feedback
71 DH Study of Support Needs to facilitate record access, 2012 (unpublished). 72 Haughton Thornley Medical Centre website statistics, December 2011. www.htmc.co.uk
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4. Define the revenue models which will New revenue models may have to be enable technical readiness considered, such as generating income via Intro The Information Strategy Impact Assessment73 targeted advertising, selling anonymised identifies Clinical Commissioning Groups data to commercial partners, or providing
(CCGs) in England as bearing the burden of applications which end users pay for. 1 the costs of record access but, currently, it There are numerous ethical issues which is unclear how the funding flows will work, arise from these ideas. Without a clear
or what the revenue model should be for framework defining what revenue models 2 providers of PHR platforms. UK Governments are acceptable, providers may not have the are not commissioning or paying for PHR financial incentives needed to innovate services centrally. Local providers and in this field. There is a tension between 3 However, enormous benefits accrue when CCGs will need to decide how best to pay allowing local innovation and procurement, patients have the opportunity, through for new services. Commissioning support and ensuring that solutions are made a PHR platform, to integrate information organisations may have a role to play too. available on an affordable basis that allow 4 from different parts of the health and social patients access to records from all parts of Electronic health record suppliers are at care system with applications to suit their the health system.
various stages of developing their record circumstances and their own data. Suppliers 5 access interfaces. For GP systems, access is of such platforms will be looking for return relatively straightforward, and the biggest on investments and, with many providers ‘We’re a million miles away from meaningful access to all records everywhere.’ UK supplier already has a well-established involved from across the health and social “ 6 system, with other competitors in the process care system, it is less clear who will pay. For GP commissioner of developing theirs. The revenue model for example, would a hospital in the future need
these systems is relatively straightforward; to subscribe to numerous different PHR 7 they are an add-on to existing electronic platforms or portals so that patients could
health record systems which may be charged choose between several when accessing Feedback for or offered free of charge. their electronic health record?
73 The power of information impact assessement. Department of Health, 2012. www.dh.gov.uk
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Developments around the world Box 15 Intro
The US is far ahead of the UK in terms of the In France health information systems are also In Denmark the Sundhed.dk portal collects number of patients accessing their records. being redeveloped to improve, for example, and distributes healthcare information among There, 10% of people surveyed in 2010 said information sharing, electronic prescriptions citizens and professionals. It was commissioned 1 they have some form of personal health record and decision aids. At the heart of this is the to bring together information from all parts of (although their definition is broader than the Dossier Medical Personnel (DMP) - a public- the health service; offer a shared platform for
one we use here), up from 3% in 2008.74 Much funded national electronic health record communication; give insight and transparency 2 of this access provision is via providers, such available to any French citizen. The user can to empower patients; and give providers as Kaiser Permanente and the Department enable or disable emergency access; receive easy access to patients’ medical history. Every
of Veterans Affairs. The US stimulus package information from their health professionals; Danish citizen has their own personal page. 3 has focused partly on the introduction of add their own data; control all accesses by Here, the citizen can find accurate and up-to- a nationwide network of electronic health health professionals; and nominate their doctor date healthcare information - for example:
records. They believe this will improve health to manage their record. 2012 plans include treatments and diagnoses from the hospital 4 and save money. The US’s HITECH Act (Health accelerating uptake by incorporating DMP as a patient record; book appointments with his Information Technology for Economic and quality payment indicator, to develop training GP; get repeat prescriptions; monitor drug
Clinical Health) has up to $36.5 billion available and education, and to leverage patient access. compliance; survey waiting lists and quality 5 out of the $916.1 billion healthcare budget.75 ratings of hospitals; register as an organ donor; This will be largely distributed through and get access to local disease management
incentive payments to hospitals, physicians systems in out-patient clinics. Health 6 and qualifying providers for ‘meaningful use’ professionals can also get secure and controlled of certified electronic health records.76 This access to the personal data of patients they are
includes giving patients timely electronic actively treating. 7 access to their health information; patient-
specific education resources; and electronic Feedback reminders for preventive or follow-up care.77
74 Markle 2010 survey on Health in a Networked Life. 75 www.usfederalbudget.us/health_care_budget_2013_1.html 77 www.hitechanswers.net www.markle.org 76 Washington Healthcare News, November 2009. www.wahcnews.com
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Healthcare increasingly exists in an online, Commissioners and providers need to plan electronic environment. While patients’ for this, and the needs of patients and users Intro records have not been at the forefront of must be foremost. Careful design is crucial to this, there are many advances being made in make the service accessible to all, regardless
this field and the advantages are becoming of literacy skills. 1 clearer. The future looks set to embrace At national level, a clear road map is health record access in some form or another. needed to define the path to PHRs, and
Allowing patients access to their records progress tracked and rewarded through the 2 should form part of a shift towards confident, structures being put in place by the National empowered, informed patients. Information Commissioning Board. 3 is an intervention in its own right and record Patient organisations should campaign for access must become standard practice the development of shared PHRs, and also so that everyone can benefit from the
help communicate the benefits of these to 4 information revolution. their members. They can also contribute to Ultimately, record access at the individual the development of information systems to ‘It’s about being an active partner, institution level is not enough. We should best suit their members. Designers of self- 5 aim for shared PHRs for all service users, management courses should also include having choices, and a relationship with “the doctor based on trust. It’s about which enable them to link and contribute to record access in the course content. being a happy patient!’ information about them from all parts of the Information producers should include the 6 Patient accessing records at Haughton health and social care system. benefits of record access when they are Thornley Medical Centres For this to happen there needs to be clarity producing information. They should also about funding models, intra-operability and consider how best to tailor their output for 7 information governance. integration into online information systems. Feedback
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Useful resources Personal health records: a guide for clinicians by Mohammad Al-Ubaydli. Intro Arran and Ayrshire patient portal evaluation This book has been written by a doctor who has developed his own personal www.axiomconsultancy.co.uk
health records software for patients and 1 Department of Health England’s 2012 doctors to interact. The book explains how Information Strategy to get the best from the patient’s records
www.dh.gov.uk and how to put the information to good 2 use, helping both the patient and the Dr Peter S’s blog as a GP implementing clinician to a more effective and efficient record access outcome in any clinical situation. 3 http://gprecordaccess.blogspot.co.uk Record Access Collaborative Haughton Thornley Medical Centres
A network of organisations and individuals 4 website who are interested and supportive of Renal PatientView evaluation www.htmc.co.uk record access. It aims to raise awareness www.kidneycare.nhs.uk
Markle Connecting for Health and increase uptake of record access, 5 A public-private collaboration in the US. support the development of national Personal Health Records - putting Their goal is to improve people’s health standards, and offer information and patients in control? by 2020Health
and healthcare through innovations in evidence about current developments. (in press) 6 information technology. This includes www.record-access-collaborative.org www.2020health.org opinion surveys, frameworks (for example, on networked information and PHRs) and 7 research. www.markle.org Feedback
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Patient information on record Requesting amendments to health and Glossary of terms access social care records published by the Adult Care Support Record (ACSR) Intro National Information Governance Board There are still relatively few publications for The record kept about an individual in social care; patients about electronic record access, but a www.nigb.nhs.uk similar to the PHR, but distributed across a wider
range of systems and infrastructure. 1 number of information resources have been Patient access to records information pack developed about record access in general, for published by NHS North West as part of Application (App) example: their Patient Access to Records Programme. Software for specific purposes. Usually ‘app’ refers 2 How to see your Health Records published Records access. An introduction for to software for mobile devices such as phones. by NHS inform in Scotland patients and clinicians produced by Authentication www.hris.org.uk Coastal Medical Group, supported by North 3 Process of determining if a user is who they Lancs PCT. How do I access my Medical Records? on claim to be. NHS Choices www.coastalmedicalgroup.co.uk 4 www.nhs.uk Clinical Commissioning Groups (CCGs) The new health commissioning organisations
Leaflets about the Summary Care Record which will replace Primary Care Trusts in April 5 and The Care Record Guarantee published 2013. They will be responsible for planning and by Connecting for Health in multiple buying healthcare. languages 6 www.connectingforhealth.nhs.uk eHealth Healthcare supported by information and services via the internet or related technologies. 7 eHealth literacy The ability of people to use emerging Feedback information and communications technologies to improve or enable health and healthcare.
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Electronic patient record / electronic Portal Tethered record
health record In the context of electronic records, a portal A record that is a subset of data held by a Intro The electronic record kept about an individual is the way a user accesses and interfaces specific healthcare provider, such as a GP by any health or social care organisation, with a records system via the internet, practice. By definition, a tethered record will
such as general practice, hospital, social care, sometimes pulling information from a not be comprehensive because information 1 pharmacy or private health provider. number of sources. held by only one healthcare provider is included. The user can access and update Interoperability Record access
their data with varying degrees of control. 2 The ability of systems to work with other Access to records, either the paper version products or systems. or electronically. Untethered record A record controlled by the individual rather Patient Secure messaging 3 than an institution. Typically, it will be In this document we have used the term Communication, similar to email, that provided through a web-based platform patient to mean anyone who uses health or protects sensitive data.
which offers the patient an online space to 4 social care services. Smartphone keep data about their health - including data generated by the patient themselves - and Patient Reported Outcome Measure (PROM) A phone offering a range of built-in
synchronises with the patient’s electronic 5 Standard measures, reported on by patients, applications and internet access. health records held by different institutions. about how they are feeling or what they Telehealth / telemedicine / telecare Untethered records offer the potential for are able to do. They can also be measured
patients to share data from one healthcare 6 during treatment or a trial. The use of telecommunication equipment and information technology to provide institution or professional involved in their Personal Health Record (PHR) clinical care to individuals at distant sites care with another. They also offer a vehicle for
A health record which may be stand-alone and the transmission of medical and the development of innovative applications 7 or may integrate health information from surgical information and images needed to and add-ons to enable patients to track and
multiple sources, and for which the individual provide that care. interpret their data, and manage their own Feedback manages and controls the content and grants health proactively. permissions for access by, and/or sharing with, other parties.
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Brain Tumour Patient Information Portal www.brainstrust.org.uk Case study A Intro
wish, seek opinions or advice from others. The portal will also allow patients to enter information about their quality of life which 1 can feed into both their clinical care and wider information about the effect of brain
This is a pilot run by the National Brain 2 Tumour Registry and brainstrust, the brain tumours on patients’ lives. cancer charity. The pilot is starting small, using data in the
The aim is for a patient information portal National Brain Tumour Registry. The pilot 3 to provide cancer patients in England with will be run in partnership with a range of access to the data about their care held brain tumour charities and the charities will by the National Cancer Registry and allow play a major role supporting the patient 4 them to comment, add to or share this community and guiding the development information. Patients will also have access and content of the portal. to more information about their care; this A key element of the pilot will be to ensure 5 will allow them to take an active part in that the technology, processes and systems the decisions about them and, should they can easily be scaled to cover all cancers sites. 6 7 Feedback
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Cerner Patient Portal (previously called IQHealth) www.cerner.com Case study B Intro
Cerner Patient Portal is a secure online portal currently used across 164 acute and primary care organisations in the US. It brings together a 1 patient’s health information into one place and is designed to allow individuals to access and electronic medical record that their physicians 2 connect with their care team easily, boosting are using eliminates timely data entry, plus gives patient loyalty and helping providers achieve them a level of transparency they enjoy. Using operational efficiencies. Features include:
digital devices to automatically send data to a 3 Secure messaging between the patient and person’s record further eliminates self-entry. their care team Programs that rely on self-entering medication,
Home Device Connectivity to capture data test results, conditions and health information 4
on approved home and lifestyle devices Individual or groups challenges - such as weight have low adoption (e.g. pedometers, scales, glucometers, blood loss or physical activity (i.e. number of steps or Doctors and nurses should recommend the
pressure cuffs) for use in the patient record and miles walked). This is done through a connected portal/PHR. Adoption grows dramatically if 5 other services application and the data can be viewed by their the care team not only uses but advocates the doctor. Medication Management to view prescriptions, system and record medicine compliance and effects Cerner has noted a number of barriers and Involve the individual in their care plan. Connect 6 eVisits/eConsultation. A healthcare professional solutions over the last 10 years: condition management tools to the individual can respond while viewing the patient’s actual PHRs need to be connected to a provider. so that they can track their progress 7 record and have immediate access to past Programs that have limited interaction between The novelty of simply having access to your problems, current medications, allergies and test individuals and their providers have low adoption information is not enough. For the system to Feedback results Users want to connect with their data be widely adopted it needs to drive health automatically. Showing individuals a view of the improvement.
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EMIS Patient Access www.patient.emisaccess.co.uk Case study C Intro
EMIS is one of the main GP software Practices have reported a dramatic companies in the UK. Patient Access is its reduction in administration time and own patient module. It offers online services overheads as Patient Access is fully 1 to over 1.36 million active patients. In integrated with the EMIS clinical system. Scotland it is paid for by NHS Scotland. It is What’s more, EMIS says Patient Access can 2 used by more than 231,500 patients. significantly reduce missed appointments Practices that use the EMIS system for and free-up practice telephone lines for patients without internet access. clinicians can turn on whichever parts of the 3 Patient Access module they wish. Patients Patient.co.uk is the information service may then: provided by EMIS for EMIS’s Patient Access.
view, book or cancel appointments This gives trusted medical information, 4 accredited by the Information Standard, on request repeat prescriptions a wide range of diseases and conditions.
view their GP medical record, including 5 letters, consultations, test results, prescriptions
send secure messages 6 update contact details pre-register if they are new to the surgery. 7 Feedback
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eRedbook www.eredbook.org.uk Case study D Intro
This is an electronic version of the existing, parallel. Data added to the paper version paper-based Redbook - a national standard using a digital pen and other devices, such Personal Child Health Record. It will be as tablets, will be automatically added to 1 created, updated and maintained via an the e-version. online application by either the custodian
Potential benefits over the paper version 2 of the eRedbook, or the relevant healthcare include having it always available and professional. up to date; improved data collection for
The eRedbook will store personally research; better parental engagement; 3 identifiable data on Microsoft’s HealthVault improved information sharing and reduced system, for privacy- and security-enhanced information duplication; and improved
data storage. In the future there will also be healthcare commissioning. 4 bolt-on modules that can allow specialist eRedbook is still undergoing pilot testing. sections to be included (such as on epilepsy Results are expected in spring 2013. or Down syndrome) and translated versions. 5 While the paper version of the Redbook is still being used, the e-version will run in 6 7 Feedback
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Haughton Thornley Medical Centres www.htmc.co.uk Case study E Intro
‘[During a pre-op interview at the hospital] the health worker asked my 1 Dr Amir Hannan at Haughton Thornley Access is via EMIS Patient Access and there “wife for a list of her current medication. Medical Centres has set out to make records are now over 1,900 patients registered for We did not have this information with us.
as accessible as possible to patients. He record access. Dr Hannan has found that 2 However, I was able to use the hospital started offering online access to health accessing records online reduces the need computer, and bring up my wife’s repeat records and other services, including for GP and practice nurse appointments, prescription. The health worker was appointment setting and re-ordering gives patients the opportunity to view tests 3 quite amazed that this could be done. of repeat prescriptions, in 2006. Since results and other aspects of their records She was able to print off the medication establishing a patient information portal when travelling as well as from home, and list. It saved her time writing the list, and in 2008, the take up of online services has supports shared decision-making.78 4 eliminated any chance of error.’ accelerated, with patients also benefiting from a trusted source of health information HTMC patient via the web which links to rich sources of 5 information from a range of providers. 6 7 Feedback
78 http://informationstrategy.dh.gov.uk
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HealthSpace www.healthspace.nhs.uk Case study F Intro
What do you see as the main benefit of using an online health portal like HealthSpace? 79
HealthSpace 1
71% Easier management of my own health 74% This NHS England patient portal 69%
69% provides basic services such as an Allow for easier contact with my 2 69% online personal health organiser, a diary doctor, nurse or healthcare advisor 67% 54% and address book, and appointment Enable me to monitor and update my health records 58% 54%
booking through ‘Choose and Book’. 3 56% Improve quality of conversations with doctors and nurses 56% There are also advanced services such 51%
as access to Summary Care Records 47% Reduce the need for face-to-face consultations 47%
(for patients in areas where these 48% 4 have been created) and HealthSpace 48% Improvement in the convenience of care I receive 45% Communicator (a pilot scheme that 44% 42%
Allow easier access to my personal 5 allows patients to communicate 43% health information when I travel 41% electronically with their healthcare staff). 39% Improve my understanding of my long-term condition 49% January 2010 figures showed almost 33% 6 80,000 people had registered for a 44% KEY: Tracking and monitoring the health of others I care for 13% Carer 15% basic HealthSpace account but uptake LTC I do not see the benet of using an online 3% Total has been disappointing and it is being 3% Personal Health Record portal 3% closed down. 7 0% 10% 20% 30% 40% 50% 60% 70% 80% Feedback
79 HealthSpace Patient Survey Report, January 2010.
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Kaiser Permanente www.kp.org Case study G Intro
Kaiser Permanente is one of the US’s largest In 2011, Kaiser Permanente members viewed healthcare and health plan providers. 29 million lab test results, sent 12 million HealthConnect is the healthcare provider’s emails to providers and refilled 10 million 1 electronic health record system. This is linked prescriptions through kp.org. Users in the Northwest region had 7-10% to its PHR, My Health Manager on kp.org. fewer office visits and made 14% fewer
According to a 2010 Kaiser Permanente 2 telephone contacts than members not using There are 3.9 million members registered study,80 secure patient-physician email My Health Manager. for My Health Manager - 63% of eligible messaging improves the effectiveness members. Users can: of care for patients with diabetes and Kaiser Permanente expanded the access of 3 access their medical records, including hypertension. Usage of kp.org is also My Health Manager to mobile devices, such allergies, past visit information, associated with member retention and as smart phones, in early 2012. In April 2012,
immunisations and ongoing health satisfaction. In a 2012 survey, 72% of 15% of traffic to kp.org came from mobile 4 conditions members surveyed agreed that the website devices. view test results helps them get the care they need, and email physicians and other care givers 86% said they would recommend kp.org. 5 In one region, members using the online order repeat prescriptions appointments feature were 33% less likely
6 schedule and manage appointments to not attend appointments than members receive healthcare reminders. booking through the facility. 7 Feedback
80 Zhou YY, Kanter MH, Wang JJ, Garrido T. Improved quality at Kaiser Permanente through e-mail between physicians and patients. Health Affairs 2010: 29(7): 1370-5. http://content.healthaffairs.org
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Looking Local http://lookinglocal.gov.uk Case study H Intro
access services via Sky & Virgin (over 14 million NHS Choices - Patients can access a range of homes). Research into mobile and smartphones health information, from local health service shows that 91% of UK adults have a mobile and listings to a Medical A-Z, Live Well advice and 1 nearly 50% of adults now own a smartphone. the latest health news. Owned and managed by Kirklees Council, One third of adult smartphone users say Individual health organisations have also 2 accessing the internet on their phone is more this bespoke technology allows multi- developed their own services: platform publishing on interactive TV (Sky and important than internet on any other device and reports are showing that people in lower • NHS Sefton CCG uses Looking Local to
Virgin), mobiles and smart phones (including 3 offer a range of information and services applications), and Wii and Facebook. socio demographic groups are bypassing the home PC option and buying smartphones to go including GP appointment booking, repeat Looking Local enables public sector partners online and make calls. prescription ordering, local health news to deliver services and publish information and information on healthy living, specific 4 Partners include: on channels and devices that they might not conditions and information for carers. This EMIS - Patients can log into Patient Access to be able to offer alone. Its specific focus is on local content is enhanced by local and
see their medications, make an appointment 5 digital inclusion and using new and popular national partners including the British Lung or order a repeat prescription technologies to widen access. Foundation, Diabetes UK and the British NHS Scotland - Patients can access: services There were 1.83 million sessions on Looking Heart Foundation. In 2010-2011, 200 people from NHS 24, NHS Inform, Care Information 6 Local in 2011, up 36% on the year before. per week accessed the service Scotland and Scottish Backs; health Nearly 8 million people across the UK do not questionnaires; GP appointment booking; • Baywide CCG in South Devon uses Looking Local to bring information and services have access to the internet, so PHRs and all access to local health services; information 7 other electronic services are not available to from the Health A-Z; seasonal health advice; together from 21 GP practices. Patients can make appointments and order repeat them; many of the people offline have the news, health and wellbeing guides; as well as Feedback highest reliance on health services and the links to local support organisations. Around prescriptions, as well as get information on wider public sector. However 57% of homes can 350 patients a week are using the service local services and news.
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MyALERT www.alert-online.com/myalert Case study I Intro
Functions include: personal tools 1 health management trackers risk assessment forms
MyALERT is a US clinical software company scheduling features. 2 and MyALERT is their PHR provision. MyALERT allows citizens to access Other main features include:
information on their medical record, and to having all information and clinical data in 3 register their own health-related details via one place the internet. There is also a mobile phone allowing users to actively participate in
version. Current number of users is around the documentation of their health status 4 12,500. by registering and editing information Doctors can use MyALERT to monitor a related to problems, allergies, lab test user’s health condition and provide advice results, medication and immunisations 5 to help promote healthier living. connection to healthcare institutions. 6 7 Feedback
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My Diabetes My Way www.mydiabetesmyway.scot.nhs.uk Case study J Intro
Developed by NHS Scotland and University My Diabetes My Way experience of PHR deployment: of Dundee, this is the official NHS Scotland Barriers Solutions information portal for people with diabetes and 1 Staff Awareness The team began by delivering presentations at staff training their carers. By May 2012 there were around 755 If front-line staff are not driving a PHR initiative, they may events and clinical network conferences and by ensuring registrants. Usage of the website has doubled have little interest in engaging, or may not have heard the project was referenced in strategic documentation (e.g. over the last twelve months and work continues about it. Dissemination via clinical networks was not as diabetes action plan). However, the most effective way of 2 straightforward as anticipated. pushing the initiative has been to target patients themselves. to raise awareness across the health service and through patient groups. My Diabetes My Way User Awareness Word of mouth is an incredibly efficient tool but is not Making patients aware of a PHR initiative is a challenge, sufficient on its own. My Diabetes My Way have advertising builds upon the NHS Scotland shared diabetes 3 particularly when one clinical site is not directly targeted. materials in all hospital diabetes clinics in Scotland, the web record (SCI-DC) which captures data from This is made even more challenging when staff awareness address is on some screening letters and the team present primary, secondary and tertiary care, specialist is low. at local patient groups and conferences. Articles have been published in local and national media and there are plans screening services and laboratories. to have cards inserted with prescriptions when people with 4 Service users can access: diabetes collect their medicines from any Scottish pharmacy.
all of their available information regardless of Technical Skills National statistics from August 2011 show that ~85% of the many locations in which their care takes In an older population, such as those with type 2 people in the UK have access to the internet at home or 5 diabetes, computers are still not commonly used and in elsewhere. Those who are not computer literate should place some cases people are scared or simply not interested in speak to family members or friends who are, or find out test results - the most popular section of the using them. about training at their local library. 6 website Motivation This is a long-term challenge - part of the wider paradigm tailored information leaflets, videos and Some may not have the motivation to ‘self-manage’ and shift described on page 10 (box 3). prefer to continue with the paternalistic healthcare model. interactive tools to help them learn more 7 about diabetes and how the condition can Health Literacy The system aims to present data in ways that allow users to be managed effectively. Displaying clinical results does not necessarily make them better interpret their information - for example, personal Feedback The experience of My Diabetes My Way understandable - either for the latest results or for data target charts. histories. Line graphs are not necessarily the most effective illustrates some of the barriers and solutions to way of showing trends or how well someone is doing. PHR deployment:
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myhealth@QEHB www.uhb.nhs.uk Case study K Intro
University Hospitals Birmingham NHS Links to reliable information about Foundation Trust is about to roll-out their treatment and condition 1 its bespoke web-based patient records Options to connect with other portal, which allows those with long- patients and medical practitioners to term conditions to view and update create their own support network 2 their medical records. A ‘Recent activity’ area to keep the The myhealth@QEHB portal was piloted user up to date with alerts and so
with patients with a long-term liver users can see what they have done, 3 condition. But from July 2012, patients what they need to do, and what receiving treatment in specialties such others in their support network have
as diabetes and prostate cancer will chosen to share 4 also have access to the system. The option to submit information Patients can log in to their personal direct to their consultant, and store home page, My Health Today, which and share files pertaining to their 5 will include: health on the system.
Diagnosis, medication, test results, 6 discharge letters, admissions to hospital, details provided in clinical
appointments, and contacts 7 Feedback
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myRecord Case study L Intro
The myRecord project is a collaboration between the NHS Alliance, The Health Foundation, InHealth Associates, NHS Lewisham, NHS Berkshire East PCT and clinical commissioning 1 groups, the RCGP Informatics Group, Diabetes UK and PAERS. So far approximately 450 patients have signed up in the two test 2 bed sites/practices where the team is working closely to test what interventions are most successful in recruiting patients.
The aim is to give Lewisham patients access to their medical 3 records online, offering support to signed-up patients and practices, and working to see what helps and what gets in the
way. The team has engaged with patients, GPs, the Lewisham 4 record access facilitator and a range of PCTs and commissioning groups.
Patients and practices will become increasingly involved as 5 partners during the course of the project, as record-access champions and co-designers. This is a programme to work with
practices to create an attitudinal shift to make online record 6 access the norm. 7 Feedback
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NHS Arran and Ayrshire Patient Portal Case study M Intro
The development of this online patient portal After a six-month pilot in two GP practices, A focus group with patients with was lead by GP Jim Campbell. The Scottish an independent evaluation of the portal was long-term conditions (diabetes Government provided funding for NHS published in May 2011.81 During the pilot, 391 and COPD) indicated that they 1 Ayrshire and Arran to develop it further. The patients registered to use the portal, and 50% would have concerns about purpose of the portal is to allow patients, of these went on to use it. The majority of the credibility of information particularly those with long-term conditions, survey respondents were using the portal to they found on the internet, but they had 2 to take more control of their own health by order prescriptions (86%). In addition to this, confidence in the approved information a combination of online services and self- over one-third (37%) were using it to view offered in the portal. They also said they management, including: information from their health records (such found it reassuring to be able to see what 3 Information on medicines as allergies, test results and alerts). Nearly a information was contained within their own quarter were also using it to monitor their medical records and check its accuracy. Repeat prescription ordering 4 blood results. The majority of respondents Access to elements of the health record, The pilot evaluation estimated that, assuming (81%) felt they had benefited from using the such as test results the portal had operated for 12 months, it portal. They said that they had benefited from Appointment requests would have possibly achieved a total saving 5 being able to: of £69,194. This is based on 2% of the GP Recording own measurements (such as Order repeat prescriptions more easily practices’ population using the portal, and blood pressure, blood sugar) and mood Reduce the time and cost of telephone calls 5% of the GP practices’ long-term conditions 6 Goal setting to their surgery patients using the portal. These cost reductions Secure messaging between healthcare were based on savings that might arise from, Track their health
professional and patients for example, fewer outpatient, day-case and 7 Access services more easily and Approved links about their particular health practice nurse appointments, and fewer conveniently. conditions. emergency admissions, of patients with long- Feedback term conditions.
81 NHS Ayrshire & Arran: Evaluation of on-line patient portal. Axiom Consultancy (Scotland) Ltd, May 2011. www.axiomconsultancy.co.uk
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PAERS iPatient www.paers.net Case study N Intro
PAERS (Patient Access to Electronic Record It is also possible for patients to view Systems) is an independent company set their record through a kiosk in the up by three doctors to enable patients to surgery. Authentication is via fingerprint 1 access their GP record. Currently all EMIS identification. Information can only be seen practices can offer this service through by the patient directly in front of the screen, 2 PAERS. The secure online service is free and and cannot be overlooked by those nearby. patients can access it from a web-browser This service has a cost. anywhere in the world, including through 3 their mobile. So far there are about 100 practices signed up. P atient
Details include: 4 full and summary medical record, with links to information and education on A ccess diagnoses, support groups, test results 5 and medicines E lectronic consultations 6 test results (if they are normal) current medications R ecord
vaccinations 7 letters S
ystem Feedback patient information leaflets.
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Patients Know Best www.patientsknowbest.com Case study O Intro
Set up by a clinician passionate about Great Ormond Street Hospital is using patients accessing their own records, this PKB to help look after children with ‘I need quite regular contact, day-to- online PHR is totally in the patient’s control gastrointestinal failure. Each patient needs day, because things change on a daily 1 “basis with the feeding; sometimes I need and is already integrated into the NHS complex care spread across London. Using secure network. First, a patient registers this portal, the local hospital, GP surgery, it reviewing quite urgently. So say I’ll 2 with PKB and then invites whoever she community nurses and home healthcare see someone from neurology, gastric, wants to access it - for example, health companies are all able to use the same nutrition, physios and everyone really professionals, social care workers and health record. PKB is also being used in on a weekly basis. When I was younger 3 family, inside or outside the NHS - allowing Torbay Hospital in Devon to allow patients you really had to get into contact with them all to work together as a team. receiving care from the cystic fibrosis, doctors because you would constantly surgery and speech therapy teams to be on the phone and then they wouldn’t 4 Anyone from the team can upload and be able to get back to you and then share information receive test results and conduct online consultations. It is also working with a you’d have to try and send an e-mail to Secure messaging between patients and someone and they necessarily wouldn’t
patient group, The Thalidomide Trust, to 5 clinicians is integral to the system provide its patients with their own PHR. get that e-mail. It was just really hard to Information shared includes letters, And in the US, PKB is being used in a trial keep in touch. It’s just really brought the talking with doctors into the 21st Century
results, prescriptions and medical notes looking at whether giving gastroenterology 6 patients access to their records saves really, it just makes living with a medical Health data can be sent and received - healthcare costs. condition a lot more easier, so it just feels for example, daily blood sugar results like you have an equal say on your care.’ 7 The system allows for online consultation, Patient using PKB
stored in the patient record. Feedback
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Renal PatientView www.renalpatientview.org Case study P Intro
Renal PatientView is an online portal initiated by the Renal Information Exchange Group and further developed by NHS Kidney 1 Care. There are now over 19,000 registered patients. The portal enables NHS kidney A recent evaluation82 showed nearly all about treatment; and 75% felt more involved 2 patients to: patients found it valuable to have access to with decisions about their care. Only 5% felt information from their own health record confused by the lab results and 14% worried view their test results available over the internet. Most patients about things they read. get information about their disease and 3 (94%) found the results section the most treatment Professionals felt that patients who use useful, followed by information on their Renal PatientView were more informed; add their own data such as blood pressure, medicines (47%), letters (43%) and ‘Enter my more involved in treatment decisions; 4 glucose and weight readings own results’ (38%). Of the functions used more prepared for hospital visits; and use an online discussion forum. the most, the results section was visited the better able to communicate with their most, followed by the patient’s information, GPs and, with the patient’s permission, other doctors and follow their recommendations. 5 healthcare workers can also log in to see this medicines and patient details. Professionals also felt that their patients’ use information - this is particularly useful for Most users of Renal PatientView (88%) felt of Renal PatientView had not increased their
non-specialists involved in the care of renal that it made them feel more in control of workload. 6 patients, or when patients are looked after their medical care; 86% found it gave them a in more than one centre. Funding is from the better understanding of their kidney disease;
Government in Scotland or, elsewhere, a small 79% found it helped them communicate 7 annual charge to participating renal units. better with their doctors; 77% were reassured Feedback
82 Renal Patient View: A system which provides patients online access to their test results. Final report. NHS Kidney Care, February 2012. www.kidneycare.nhs.uk
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South London and Maudsley NHS Foundation Trust (SLaM) ‘Rather than the clinician holding it with clinicians, rather than vice Intro Case Study Q on to the records, it is about the versa... several of the service users “service user having the records. It’s have focused on how exciting it is SLaM (a national centre for psychiatric care), local GPs and Microsoft about being able to see them, it is actually for them to feel in control, worked together to develop a limited PHR, which is stored online about being able to understand to enter into a dialogue they have 1 on Microsoft’s HealthVault. The programme, called myhealthlocker, what’s written about them, and also, initiated and recorded and they can was launched in May 2012. Service users can securely collect, store, more importantly actually, to be able own and add to, rather than feeling edit and manage their own heath information from a variety of to write about themselves. It’s about they are the recipient of a dialogue 2 sources. They can select what information is shared and who they bringing their experience and sharing from the other side.’ SLaM doctor share this with. 3 Service users can open a myhealthlocker account and agree with their health worker exactly what information about their care it is helpful to have access to. This could include: ‘For the last few years I’ve been going to be very useful because 4 their SLaM careplan, which the patient can contribute to diagnosed with schizophrenia so of instant access to it, because of “there’s a lot of paranoid feelings the way there’s an input from the information about medicines, emergency contact details and which stops me getting involved professionals and it seemed very easy
health records 5 in things. After a few years the gap to use. With myhealthlocker I check
a health journal to keep track of symptoms, sleep patterns, between seeing the care workers my messages via email and so on behaviours and emotions and the consultants got longer and every day so even if it is something access to resources and tips on staying well and managing their longer; this was one of the things I really simple it does have a significant 6 health and wellbeing realised about myhealthlocker - if effect in terms of bringing me back in clinicians and patients contributing to records directly to work it had existed then I would have with other people. My expectation is collaboratively on care and treatment. This encourages a two- found out what the changes were that it is going to have a major impact 7 way flow of information between patients and clinicians going on.When I first heard about on the sense of isolation. Once there Feedback the patient and care worker deciding what information to share myhealthlocker it looked very is a point of contact it made a lot of with each other, and can also share part or all of this with a interesting. It seemed like it was difference.’SLaM patient family member or carer.
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TPP SystmOne www.tpp-uk.com Case study R Intro
TPP is a clinical software company supplying SystmOne - single networked health records - 1 to 120,000 users in the NHS. SystmOne is accessible to any 2 healthcare professional anywhere, across a range of disciplines from over 1800 GP practices, plus areas such as child health, community care, urgent care and palliative care. 3 SystmOnline is a free web-based service within SystmOne that provides patients with the ability to:
access their medical record 4 arrange appointments order prescriptions complete questionnaires 5 update personal details ask questions. 6 So far there has been widespread uptake of transactional elements of online patient access, such as booking
appointments and ordering repeat prescriptions. TPP is now 7 beginning to pilot the wider functionality of patients’ record
access. Feedback
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Tribal Patient Relationship Management www.tribalgroup.com Case study S Intro
set agendas for future meetings Tribal has evidence showing that its Patient transfer data from glucose monitoring and Relationship Management system cuts 1 insulin pump settings healthcare professional administration by 25%, and need for outbound telephone calls check on their progress (for example, their by 50%, as well as increasing the ratio of Tribal is a technology provider. Its Patient haemoglobin concentration) and compare 2 patients to specialist healthcare workers by Relationship Management system is a secure values with peers and standards; this may more than 30%. patient portal helping patients manage their allow early detection of events that might
own health and long-term conditions in lead to an admission 3 their own homes, supported by healthcare use two-way multi-lingual communication professionals. via new channels such as email, text For example, Tribal’s paediatric diabetes message and Twitter, as well as traditional 4 portal for University College London letters Hospitals NHS Trust is a secure portal for receive training and educational 5 patients to: information
find information about conditions share information with approved third
book appointments parties, such as schools. 6 access their care plan 7 Feedback
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University Hospital Southampton Case study T Intro NHS Foundation Trust
UHS is about to start piloting the use of Microsoft’s HealthVault to deliver online access to hospital 1 services and to achieve the vision of ‘no decision about me without me’ for its patients. The study will start with patients with irritable bowel disease 2 but there are plans to include other groups, such as pregnant women with diabetes, and patients with 3 respiratory problems or other long-term conditions. During the pilot, patients will get:
access to their discharge summaries and upcoming 4 appointments ability to securely communicate with their clinicians
in a similar way to email 5 the option to keep a health journal. In the longer term, patients will also get: 6 lab results clinic information
specific information about their condition. 7 Feedback
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US Department of Veterans Affairs www.myhealth.va.gov Case study U Intro
The US Department of Veterans Affairs view VA appointments is a government-run benefit system check lab results 1 for military veterans, their families and access trusted health and medical survivors. It is the US government’s information second largest department and runs
order repeat prescriptions and view 2 medical facilities, clinics and benefits prescription history offices. email the VA healthcare team.
My HealtheVet is the VA’s record 3 access service and provides an online VA have also developed the ‘Blue gateway to benefits and services. All Button’. This is on the health record webpage and by clicking on it the users can enter their own information. 4 Those with upgraded accounts are user can download any information able to: into a simple text file or PDF that can be read, printed or saved on any 5 view their self-entered information computer. It gives complete control of access parts of their official VA health the information without any special record
software, enabling the data to be 6 view their military service shared with anyone, such as providers, information caregivers and family. 7 Feedback
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