Patient Engagement Advisory Panel

January 14, 2014 Washington, DC

Patient Engagement Advisory Panel, January 14, 2014 Recap of Day 1: Overview of Day 2

Sue Sheridan, MIM, MBA Charlotte W. Collins, JD Director of Patient Engagement Chair Suzanne Schrandt, JD Darius Tandon, PhD Deputy Director of Patient Co-Chair Engagement

Patient Engagement Advisory Panel, January 14, 2014 Agenda for January 13

9:00AM – 9:45AM Discussion with Dr. Selby

9:45AM – 10:30AM Introduction to the PPRN

10:30AM – 10:45AM BREAK

Discuss the Patient Engagement Topics in Data Network Development 10:45AM – 11:45AM *Small Group Breakout*

11:45AM – 2:00PM Open Forum for Discussion

2:00PM Meeting Adjourned (Boxed Lunch Provided)

Patient Engagement Advisory Panel, January 14, 2014 Discussion with Dr. Selby

Joe V. Selby, MD, MPH Executive Director

Patient Engagement Advisory Panel, January 14, 2014 Launching PCORnet, the National Patient- Centered Clinical Research Network

Rachael L. Fleurence, PhD

January 14rth, 2014

5 PCORnet

6 PCORnet: the National Patient-Centered Clinical Research Network

The goal of PCORI’s National Patient-Centered Clinical Research Network Program is to improve the nation’s capacity to conduct CER efficiently, by creating a large, highly representative, national patient-centered clinical research network for conducting clinical outcomes research.

The vision is to support a learning US healthcare system, which would allow for large-scale research to be conducted with enhanced accuracy and efficiency.

7 Patient-centeredness is at the heart of PCORI’s mission and vision

. The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit health research organization authorized by the Patient Protection and Affordable Care Act of 2010.

. PCORI funds patient-centered research to assist patients, caregivers, and other stakeholders in making informed health decisions.

Mission

PCORI helps people make Vision informed healthcare decisions and improves Patients and the public have healthcare delivery and the information they need to outcomes by producing and make decisions that reflect promoting high integrity, their desired health evidence-based information outcomes. that comes from research guided by patients, caregivers, and the broader healthcare community.

8 Patients and stakeholders play critical roles in all aspects of PCORI’s work

9 Overall objectives of PCORnet: achieving a single functional research network

Engagement of patients, providers and health system leaders Support and conduct of multi-center observational and interventional CER studies External data and research partners participate with PCORI-funded networks Researchers not directly affiliated with PCORnet participate through collaborative arrangements. PCORnet partners use the resources created with PCORI’s support for a range of activities supported by other organizations.

PCORnet Steering Committee Each Clinical Data Research Network Each Patient Powered Research Network Patient representative HHS agencies . NIH . FDA . AHRQ . CDC . CMS . ONC . ASPE Medical product / device manufacturers PCORI and Coordinating Center 12 29 CDRN and PPRN awards were approved on December 17th by PCORI’s Board of Governors

13 Clinical Data Research Network Partners

14 Goals for Clinical Data Research Networks (CDRNs)

Extracts from EHR data are standardized within PCORnet A minimum of 1 million patients enrolled Capable of implementing clinical trials Individual network’s data in interoperable format with other awardee networks and successfully responds to queries Patients, health system leaders, and clinicians involved in governance and use of network At least three patient cohorts identified, characterized, and surveyed

15 CDRN Highlights

• Networks of academic medical centers, hospitals and physician practices • Networks of non-profit integrated health systems • Networks of low income clinics • Networks leveraging AHRQ investments and NIH investments (CTSAs) • Inclusion of Health Information Exchanges • Wide geographical spread • Inclusion of underserved populations • Range from 1M covered lives to 28M

11 CDRNs

CDRN Name Lead Organization Principal Investigator

ADVANCE Oregon Community Health Information Jennifer DeVoe Network CAPriCORN The Chicago Community Trust Terry Mazany Great Plains Collaborative University of Kansas Medical Center Lemuel Waitman Louisiana Clinical Data Louisiana Public Health Institute Anjum Khurshid Research Network Mid-South CDRN Vanderbilt University Russell Rothman NYC-CDRN Weill Medical College of Cornell University Rainu Kaushal PEDSNet The Children’s Hospital of Philadelphia Christopher Forrest PORTAL Kaiser Foundation Research Institute Elizabeth McGlynn pSCANNER University of California, San Diego Lucila Ohno-Machado P2ATH University of Pittsburgh Rachel Hess SCIHLS Harvard University Kenneth Mandl

17 CDRNs Disease Cohorts

Organization Common Cohort Rare Cohort

ADVANCE Diabetes Co-infection with HIV and hepatitis C virus CAPriCORN Anemia; Asthma Sickle cell disease; Recurrent C. Difficile colitis Great Plains Breast Cancer Amyotrophic Lateral Sclerosis (ALS) Collaborative Louisiana Clinical Data Diabetes Sickle Cell Disease, Rare Cancers Research Network NYC-CDRN Diabetes Cystic fibrosis Mid-South CDRN Coronary Heart Disease (CHD) Sickle Cell Disease (SCD) PEDSNet Inflammatory bowel disease Hypoplastic left heart syndrome PORTAL Colorectal Cancer Severe Congenital Heart Disease pSCANNER Congestive Heart Failure Kawasaki Disease P2ATH Atrial Fibrillation Idiopathic Pulmonary Fibrosis SCIHLS Osteoarthritis Pulmonary arterial hypertension

18 Patient Powered Research Network Partners

19 Goals for Patient Powered Research Networks (PPRNs)

Target size of 0.5% of U.S population with condition: (> 50 patients for rarest diseases; 50,000 for most common) Patient-reported data collected for at least 80% of cohort Patients involved in governance Standardized data suitable for sharing with other infrastructure members and successfully responds to queries

20 PPRN Highlights

• Variety of stakeholders in participating organizations and in leadership team: patients, advocacy groups, physician organizations, academic centers, PBRNs etc. • Strong understanding of patient engagement • Significant range of conditions and diseases • Variety in populations represented (including pediatrics, underserved populations etc.) • 50% rare diseases • Significant range in the maturity of the group in terms of data available • Several have capacity to work with biospecimens

21 PPRNs represent a number of conditions…

Organization PI Condition Proposed PPRN Population Size Accelerated Cure Project for Robert McBurney Multiple Sclerosis 20,000 Multiple Sclerosis American Sleep Apnea Association Susan Redline Sleep Apnea 50,000

Cincinnati Children's Hospital Peter Margolis Pediatric Crohn's Disease and Ulcerative Colitis 15,000 Medical Center COPD Foundation Richard Mularski Chronic Obstructive Pulmonary Disease 50,000

Crohn’s and Colitis Foundation of R. Balfour Sartor Inflammatory Bowel Disease (Crohn’s disease and 30,000 America ulcerative colitis) Global Healthy Living Foundation Seth Ginsberg Arthritis (rheumatoid arthritis, spondyloarthritis), 50,000 musculoskeletal disorders (osteoporosis), and inflammatory conditions (psoriasis) Massachusetts General Hospital Andrew Nierenberg Major Depressive Disorder (MDD) and Bipolar 50,000 Disorder (BP) Univ of California, San Francisco Mark Pletcher Cardiovascular health 100,000

University of South Florida Rebecca Sutphen Hereditary Breast and Ovarian Cancer (HBOC) 17,000

….including rare diseases

Organization PI Condition Proposed PPRN Population Size ALD Connect, Inc Florian Eichler Adrenoleukodystrophy 3,000

Arbor Research Bruce Robinson Primary Nephrotic Syndrome (Focal Segmental Glomerulosclerosis [FSGS], 1,250 Collaborative for Minimal Change Disease [MCD], and Membranous Nephropathy [MN] Multiple Health Sclerosis Duke University Laura Schanberg Juvenile Rheumatic Disease 9,000

Epilepsy Foundation Janice Beulow Aicardi Syndrome, Lennox-Gastaut Syndrome, Phelan-McDermid Syndrome, 1,500 Hypothalamic Hamartoma, Dravet Syndrome, and Tuberous Sclerosis Genetic Alliance, Inc Sharon Terry Alström syndrome , Dyskeratosis congenital, Gaucher disease, Hepatitis, 50- 50,000 Inflammatory breast cancer, Joubert syndrome, Klinefelter syndrome and associated conditions, Metachromatic leukodystrophy, Pseudoxanthoma elasticum (PXE), Psoriasis

Immune Deficiency Kathleen Sullivan Primary Immunodeficiency Diseases 1,250 Foundation Parent Project Holly Peay Duchenne and Becker muscular dystrophy 4,000 Muscular Dystrophy Phelan-McDermid Megan O’Boyle Phelan-McDermid Syndrome 737 Syndrome Foundation

University of Peter Merkel Vasculitis 500 Pennsylvania 23

Coordinating Center Co-Directors

Richard Platt, MD, MSc Robert M. Califf, MD

25 CC Executive Leadership Committee

Richard Platt, Harvard Pilgrim Health Care Institute, Harvard Medical School Robert Califf, Director, Duke Translational Medicine Institute, Vice Chancellor for Clinical and Translational Research Eric Larson, Group Health Research Institute Mark McClellan, Brookings Institution Erin Holve, AcademyHealth Bray Patrick-Lake, Director of Stakeholder Management, Duke Translational Medicine Institute

26 Task Forces

27 Governance & Collaboration Task Force

Leads: Rich Platt, Erin Holve, CDRN/PPRN co-lead TBD

Goal/Purpose: Develop policies that support trust and collaboration

28 Data Standards, Security & Network Infrastructure Task Force

Leads: Jeff Brown, Lesley Curtis, CDRN/PPRN co-lead TBD

Goal/Purpose: Create the PCORnet Distributed Research Network that facilitates multi-site research across the CDRNs, PPRNs, and others

29 PCORnet DRN Coordinating Center 1 6 PCORnet Secure Network Portal 1. User creates and submits query (a computer program) CDRN 1 2. Individual Review & Review & CDRNs/PPRNs Run Query Return Results retrieve query 2 Enroll 5 3 Demographics 4 Utilization 3. CDRNs/PPRNs Pharmacy review and run query Etc against their local data

4. CDRNs/PPRNs PPRN 18 review results

Review & Review & Run Query Return Results 5. CDRNs/PPRNs return results via Enroll 3 Demographics 4 secure network Utilization Pharmacy Etc 6. Results are aggregated 30 PCORnet DRN Operations Center

Project Policies and Query Reporting ETC… Management Procedures Fulfillment

PCORnet DRN Secure Portal

Knowledge Management System Cross project lessons learned, query tracking, meta-data capture, search functions, etc Projects Analytic Tools Administration Utilization trends Modular programs Menu-driven query Security \ Access control Observational studies File \ Query repository Summary tables Data checking tools User administration Pragmatic and clinical trials Query interface Reporting tools Workflow management

PPRN 1 PPRN 2 … PPRN 18 Other data … resources

31 PCORnet DRN Operations Center

Project Policies and Query Reporting ETC… Management Procedures Fulfillment

PCORnet DRN Secure Portal

PPRN 1 PPRN 2 … PPRN 18 Other data … resources

32 Multiple Networks Sharing Infrastructure

Health Health Health Outpatient Patient Hospital 1 Hospital 4 Plan 1 Plan 4 Plan 7 clinic 1 network 1

Health Outpatient Patient Health Health Hospital 2 Hospital 5 Plan 2 Plan 5 Plan 8 clinic 2 network 2

Health Health Health Outpatient Patient Hospital 3 Hospital 6 Plan 3 Plan 6 Plan 9 clinic 3 network 3

Each organization can participate in multiple networks Each network controls its governance and coordination Networks share infrastructure, data curation, analytics, lessons, security, software development

33 Data Privacy Task Force

Lead: Deven McGraw, CDRN/PPRN co-lead TBD

Goal/Purpose: • Identify privacy issues raising particular challenges • Highlight promising or best practices for addressing them • Develop privacy policies to govern data sharing

34 Patient & Consumer Engagement Task Force

Lead: Sean Tunis, Pat Deverka, CDRN/PPRN co-lead TBD

Goal/Purpose: • Ensure engagement of patients and consumers in all components of PCORnet • Serve as technical resource, with PCORI staff

35 Health Systems Interactions Task Force

Leads: Eric Larson, Katherine Newton, CDRN/PPRN co-lead TBD

Goal/Purpose: Help the CDRNs create a supportive environment for clinical research with their clinicians and clinical leadership

36 Ethics and Regulatory Task Force

Leads: Jeremy Sugarman, Joseph Ali, Rob Califf, CDRN/PPRN co-lead TBD

Goal/Purpose: Address ethical and regulatory issues related to research that arise in PCORnet’s work

37 Patient-Reported Outcomes Task Force

Lead: Amy Abernethy, CDRN/PPRN co-lead TBD

Goal/Purpose: Focus on measurement, collection, and analysis of patient-generated information

38 Clinical Trials Task Force

Lead: Rob Califf, CDRN/PPRN co-lead TBD

Goal/Purpose: • Adopt methods, standards, and quality by design principles for clinical trials • Develop pathways for trials, oversee trial conduct, feed back learnings

39 PCORnet Initial Interventional Trial

• Topic Generation Step 1

• CDRNs/PPRNs Rank Topics Using PCORI's Research Step 2 Prioritization Criteria

• PCORI Program Development Committee & Step 3 PCORI Board of Governors Approve Topic

• PCORI issues Funding Announcement Step 4

40 Rare Diseases Task Force

Leads: Priya Kishnani, Rachel Richesson, CDRN/PPRN co-lead TBD

Goal/Purpose: • Support identification of populations and research priorities for studies of rare diseases • Create an information source for rare diseases research • Create a discussion and advocacy forum to identify and advocate for needs specific to rare diseases research

Biorepositories Task Force

Lead: Kristin Newby, CDRN/PPRN co-lead TBD

Goal/Purpose: Support a regulatory-compliant, comprehensive, and sustainable Network-wide biorepository to serve PCORnet research

42 Obesity Task Force

Lead: Matthew Gillman, CDRN/PPRN co-lead TBD

Goal/Purpose: Facilitate construction of the obesity cohort at each CDRN, and identify potential research uses

43 Some takeaways

We need a new national capability for efficient, large-scale interventional and observational patient- centered research PCORnet will need to: . Establish priorities that patients, clinicians, clinical leaders, and investigators share . Facilitate trust leading to collaboration between networks . Embed research into practice settings without disrupting clinical operations . Create a distributed data network that protects patients’ confidential information . Develop oversight procedures that protect patients while minimizing redundancy . Engage individuals and organizations beyond the initial awardees

44 45 Program Timeline

Task Timeline Welcome Inaugural Ambassadors – Patient Saturday, September 21, 2013 Engagement Advisory Panel Invite workshop attendees, advisory September 24- October 1, 2013 panelist, merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program 15 minute break Development and release of PCOR November 2013 Science Training Refreshments in the hall Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Summer 2014 Training Conduct one-year program evaluation Fall 2014

Patient Engagement Advisory Panel, January 14, 2014 Discuss the Patient Engagement Topics in Data Network Development *Small Group Breakout* Moderators: Rachael Fleurence, PhD Jaye Bea Smalley Program Director, CER Methods and National Urban Fellow & Special Infrastructure Assistant to the Chief Officer for Sue Sheridan, MIM, MBA Engagement Director of Patient Engagement

Patient Engagement Advisory Panel, January 14, 2014 Rubric for Patient Engagement in PPRN Infrastructure Development

PCORI Methodology Standards

Rubric for Patient PPRN PFA Engagement Criteria in Infrastructure Development

PCOR Principles

Patient Engagement Advisory Panel, January 14, 2014 Phases of Infrastructure Development

• Data Collection tools/PROs • Enrollment and Diversity • Governance • Cross-collaboration with national PCOR network • Data Sharing Agreements and Policies • Access to view and download standardized EHR

Patient Engagement Advisory Panel, January 14, 2014 Rubric for Patient Engagement in PPRN Infrastructure Development

Patient Phase of Examples Engagement Milestone Infrastructure from PPRN Milestone Guidance in Project Projects Framework

Patient Engagement Advisory Panel, January 14, 2014 Patient Engagement Milestones Aligned with Infrastructure Development

Increasing size of the Roles, responsibilities and network level of influence in network Expand Consent policies for the •Increasing the •governance comprehensiveness and collection of bio-specimen diversity of the Policies for Enhancing •completeness of Patient- •The development of Reported Outcomes •network patient engagement in standardized consent •governance Assess meaningfulness and •policies Retention of network Governance usefulness of PRO members Research topic prioritization Secure tools are •collection to patients implemented that enable • Transparency in the use of •patient data for research Patients identify PROs for •patients to collect their own •Patients roles on PCORnet inclusion in database data task forces •Training for patients to access their own EHR and •Approach for enabling insurance claims patients to receive research • Enrollment Enrollment and Diversity •findings Data collection and access Approach to facilitate communication among •patients Data interoperability, privacy and Sharing interoperability, Data

Patient Engagement Advisory Panel, January 14, 2014 Open Forum for Discussion

Moderators: Sue Sheridan, MIM, MBA Director of Patient Engagement Charlotte W. Collins, JD Chair Darius Tandon, PhD Co-Chair

Patient Engagement Advisory Panel, January 14, 2014 Open Discussion

Discuss patient-centered metrics for measuring PCORI's success, both in engagement throughout the research process and in dissemination.

Share information on the S.T.A.R. Initiative.

Patient Engagement Advisory Panel, January 14, 2014 The S.T.A.R. Initiative© Strategically Targeting A ppropriate Researchers African-American Women Selecting Researchers for Patient-Centeredness in Research Design for Shared Decision-Making & Better Health Outcomes FY 2013 Review

Patient Engagement Advisory Panel, January 14, 2014 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

The Journey to Meaningful Engagement & Research Participation 2013

Pre-Research Engagement, Conversations, and participation with Underserved and Communities of Color

For Patient-Centered Outcomes Research Regina Greer-Smith MPH FACHE President-Healthcare Research Associates, LLC Principal Investigator and Creator of The S.T.A.R. Initiative Member- PCORI Advisory Panel on Patient Engagement

Patient Engagement Advisory Panel, January 14, 2014 55 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

“We’ve got to do something with the amazing energy and passion from this meeting”

So we made some notes on a napkin

The Midwest Partners Patient Engagement Cluster LLC was formed.

Regina Greer-Smith & Knitasha Washington at PCORI October 2012 Patient/Stakeholder Meeting

Patient Engagement Advisory Panel, January 14, 2014 56 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

January 2013, I took the leap of faith and designed The S.T.A.R. Initiative at my kitchen table, sharing with two friends.

I entered the concept into the Health 2.0/ PCORI Challenge and won an Honorable Mention in the Concept Category

I got busy; the expectations were high and it was a huge responsibility

Patient Engagement Advisory Panel, January 14, 2014 57 THE S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers A culturally appropriate methodology for minority communities to identify, select, & involve researchers capable of engaging communities to conduct Patient-Centered Outcomes Research (PCOR). It is an opportunity for minority communities to be involved in research as never before by selecting researchers who are sensitive to the needs of the minority communities.

Patient Engagement Clusters ©are formed in the community. They will be the “judges” who will select the researcher, work in the planning and design, and finally, dissemination of the results. There will be a strong educational component to ensure that the community is knowledgeable of research.

The S.T.A.R. INITIATIVE © It’s universal, replicable, scalable, for any community, population, & group.

Patient Engagement Advisory Panel, January 14, 2014 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers A Strategic Plan for Recruiting Researchers by Minority Communities

• Researchers who can work with minority communities

• Researchers who can help to answer the questions that are most important to minority patients/caregivers/stakeholders.

• Minority communities are involved in every step of the research from partnering in the design of the research to the dissemination and sharing of the results

• Poor/Negative relationship between medical centers and community are removed

• Minority communities and researches maintain relationships to continuously engage and design of questions for more research

Patient Engagement Advisory Panel, January 14, 2014

S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

The major components of The S.T.A.R. Initiative© are:

• Developing a mobile app that enables the African-American women to select the appropriate researchers.

• A comprehensive educational curriculum that provides health literacy and education for African-American women that is culturally appropriate so that they become experts on a breast cancer.

• A comprehensive educational curriculum for researchers to become acquainted and experts in engaging African-American Women.

• African -American women become “champions” for PCOR in the community, promote community participation and continue to identify researchers for more studies via the mobile app.

The S.T.A.R. Initiative has received two CBPR consults from The University of Illinois Community Engagement Advisory Board (CEAB) since June 2013

Dr. Carol Ferans (front center) and The CEAB continue to advise and support The S.T.A.R. Initiative as we progress.

I serve as a member and am standing in the rear row, third from the right.

Patient Engagement Advisory Panel, January 14, 2014 61 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers UIC CEAB CONSULTATION RECOMMENDTIONS

Patient Engagement Advisory Panel, January 14, 2014 62 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

Engagement Clusters© The S.T.A.R Initiative engages the community by forming “Engagement Clusters” of 15-20 patients, caregivers, and/or stakeholders committed to learning of the benefits of patient- centered outcomes research for shared decision-making and better health outcomes.

Meetings are held monthly, we continue to increase participation, and share information, text to alert of resources on The S.T.A.R. Initiative website.

Patient Engagement Advisory Panel, January 14, 2014 63 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers 2013 AWARDS

PCORI CHALLENGE AWARD OUTREACH EXPRESS National Network of Libraries of Medicine Honorable Mention-Concept

In August, 2013,The S.T.A.R. Initiative received an In June, 2013, The S.T.A.R. Initiative received an Outreach Express Award from the National Network Honorable Mention in the Concept Category of Libraries of Medicine/Greater Midwest Region S. T. A. R. INITIATIVE, an initiative consisting of a mobile app would enable The funds will support outreach materials, African-American women to connect with notebooks, participant stipends, and meeting costs. researchers and educational curricula

We were also provided with a NIH Research Librarian to provide training and research for consumer health information from Medline Plus http://www.pcori.org/2013/challenge/ http://nnlm.gov/gmr/funding/outreach/recipients. html

Patient Engagement Advisory Panel, January 14, 2014 64 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

The S.T.A.R. logo was designed from

“Awareness Ribbons” into an identifiable brand which focuses on diseases and health conditions that impact each community.

The Engagement Clusters will rotate the ribbon to the north as those diseases and/or health conditions are chosen.

The Engagement Cluster will partner with their chosen research partner(s) to develop topics and questions from their “North” awareness ribbon.

The “North Awareness Ribbon” will be different for each community. Patient Engagement Advisory Panel, January 14, 2014 65

www.healthcarera.com/home

Email, Text Messages, and In-person Engagement

Remain Engaged 24/7

Anywhere & Anytime

Scan the QR Code to learn more

Facebook, Twitter, LinkedIn

Patient Engagement Advisory Panel, January 14, 2014 66 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

Joining The S.T.A.R. Initiative is Simple Join during information sessions or downloadable from the S.T.A.R. Website

Patient Engagement Advisory Panel, January 14, 2014 67 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers ENGAGEMENT CLUSTERS 12/31/13 and 2014 Expanding to all Vulnerable/Underserved Populations

VESSELS OF VIRTUE ENGAGMEN T CLUSTER VCIM Latina 2013 Engagement HEART 2 HEART Cluster ENGAGEMENT V. Gines CLUSTER Texas FGCAI 2014 2013

S.T.A.R. INITIATIVE ENGAGEMENT CLUSTERS PASTORS FOR PCOR Englewood Community & Researcher RESEARCH MNISTRYIES Community Partnerships ENGAGEMENT ENGAGEMENT CLUSTER CLUSTER Southland Ministerial 2014 Health Network 2013

GREAT RIVER ENGAGEMENT ENGAGMENT CLUSTER CLUSTER Pastor Bruce Hanson VIRTUAL Rural MEMBERS Iowa 2013 2014

Patient Engagement Advisory Panel, January 14, 2014

Our First Community Engagement Clusters 1. Victory Christian International Ministries –Vessels of Virtue Markham, IL – 23 members 2. Full Gospel Christian Assemblies International – Hazel Crest, IL – 18 members 3. “At Large” 4 members 4. In Progress – inquiries from 2 universities, 1 library, 9 churches, & 1 beauty salon

Patient Engagement Advisory Panel, January 14, 2014 69 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers RESEARCH MINISTRIES WITH FAITH-BASED PARTNERS Bringing Awareness and Engagement Congregations and Communities

Faith-based Partners committed to patient-centered outcome research in the community

Patient Engagement Advisory Panel, January 14, 2014 70 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

Blog: National Partnership for Action

BLOGGING FOR THE OFFICE OF MINORITY HEALTH Smartphone and mobile apps: An important solution to increasing participation and engagement of minority and underserved communities

Posted on 8/22/2013 by Regina Greer- Smith, MPH FACHE

http://minorityhealth.hhs.gov/npa/blog/BlogPost.aspx?BlogType=O&BlogID=2 886

The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.

Patient Engagement Advisory Panel, January 14, 2014 71 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

ACTIVITIES and 2014 PLANS

1. Monthly Meetings – Monthly calendar developed 2. Online learning/sharing 3. Group Meeting on Feb 21 and 28 for CBPR Training • Emily Anderson, PhD-Loyola University 4. Conversations with Researchers (TBA) • Webinars, conference calls, text messaging 5. Evaluation 6. More Clusters, Partnerships, Researchers, and Engagements

Patient Engagement Advisory Panel, January 14, 2014 72 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

PARTNERSHIPS AND COLLABORATIONS New and Continuing Collaborations with Researchers, Communities and Stakeholders

Patient Engagement Advisory Panel, January 14, 2014 73 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

Curriculum and Resources

1. Received use of services of Research Librarian from NNLM to research education content and training 2. MedlinePlus 3. PCORI 101 4. Beating Breast Cancer - Video 5. CIRTification - Human Subject Curriculum –workshop/training for Feb 21 and Feb 28 6. PCORI Ambassador Training 7. African-Americans and Clinical Trials

All available on S.T.A.R. Initiative website

Patient Engagement Advisory Panel, January 14, 2014 74 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers PARTNERS FOR ENGAGEMENT, EVALUATION, AND SUPPORT SERVICES

RESEARCHERS • Dr. Carol Ferans and Dr. Marilyn Wills University of Illinois at Chicago • Dr. Emily Anderson -Loyola University • Dr. Diane Ingram -Rush University Medical Center • Dr. Rebecca Emily Johnson –Northwestern, Buehler Center on Aging, Health and Society STRATEGY/PLANNING • Jay Silver – Retired Executive Director of Intercultural Cancer Council –EDICT- Baylor University PROFESSIONAL SERVICES • Unique Solutions – Web Hosting and Social Media (minority-owned)

• Lighthouse Printing – Design and Marketing

FUNDING • Patient-Centered Outcomes Research Institute –PCORI – Challenge Award • National Network of Libraries of Medicine/Greater Midwest Region- Outreach Express Award

Patient Engagement Advisory Panel, January 14, 2014 75 S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers The S.T.A.R. MOBILE APP

S. T. A. R. Initiative© S. T. A. R. Initiative© S. T. A. R. Initiative© “S.T.A.R. GROUP” COLLABORATES “ S.T.A.R. “ APP ENGINEER DEVELOP/TESTS/LAUNCHES RESEARCHERS “APPLY” TO WITH APP DEVELOPER TO CREATE “S.T.A.R.” BY DEADLINE DATE VIA “S.T.A.R.” APP ”S.T.A.R.” APP BASED ON WELL- ONLINE APPLICATION DEFINED CRITERIA FOR RESEARCHER

S. T. A. R. Initiative© S. T. A. R. Initiative© S. T. A. R. Initiative© “S.T.A.R. GROUP “CROWD-SOURCES” TO APP ENGINEER & “S.T.A.R. GROUP” SELECT FINAL RESEARCHER “S.T.A.R. GROUP CONDUCTS “IN- REVIEW RESEARCHER APPLICANTS PERSON” INTERVIEWS TO MEET AND DECIDE THOSE WHO ARE BEST RESEARCHER CANDIDATES FIT TO DESIGN RESEARCH ***FINAL RESEARCHER SELECTED***

THANK YOU

Regina Greer-Smith MPH FACHE Healthcare Research Associates, LLC

Engage Us at: www.healthcareRA.com Email [email protected] Mobile 708 764 9607 Fax 708-335-0519 Twitter rgreersmith

Patient Engagement Advisory Panel, January 14, 2014 77 Program Timeline

Task Timeline Welcome Inaugural Ambassadors – Patient Saturday, September 21, 2013 Engagement Advisory Panel Invite workshop attendees, advisory September 24- October 1, 2013 panelist, merit reviewers, and PCORI funded project partners to join theThank PCORI you! Ambassador Program Please pick up a lunch box before you depart- Development and release of PCOR November 2013 Science Training Safe travels home! Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Summer 2014 Training Conduct one-year program evaluation Fall 2014

Patient Engagement Advisory Panel, January 14, 2014