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A Research Agenda for Translating Disease Specific Care to Patient Goals-Directed Care for People with Multiple Chronic Conditions

PCORI Deliverable: Patient Priority Care Research Agenda Meeting Meeting agenda, participants, breakout group composition and guides,

summary of award and project charter

November 10th, 2016

Table of Contents

Cover Page 1

Table of Contents 2

Meeting Agenda 3

Participant List 7

Breakout Groups 9

Patient Priority Care Summary 14

Project Charter 16

Patient Priority Care Fall Research Agenda Meeting

November 1st and 2nd, 2016 Heart House, 2400 N St NW, Washington, DC 20037

Patient Priority Care Research Agenda Meeting: Tuesday, November 1st, 2016 (Day 1)

Overall Facilitator: Wendy Nickel

Time Agenda Item Presenter(s)

10:00am-10:10am Breakfast and seating

10:10am-10:40am

Opening Remarks and Introduction • Introductions • Background, Goals and Deliverables of

meeting • Statement from PFCCpartners

Caroline Blaum Gary Oftedahl Stephen Hoy

10:40am-11:00am Keynote

Amy Berman

Session 1: Changing the Provider/Patient Relationship for Patient Priority Care

Session Facilitator: Gary Oftedahl 11:00am-11:30am

Panel Discussion: How could the clinician, patient, caregiver, family relationship support Patient Priority Care?

Moderator: Gary Oftedahl Patient/Caregiver Perspective: Phil Posner Primary Care Perspective: Jonathon Rosen Specialist (Cardiologist) Perspective: Nannette Wenger

11:30am-12:00pm

Breakout Groups (See Instructions for Breakout Group Session 1)

12:00pm-12:30pm

Report Out and Large Group Discussion Moderator: Gary Oftedahl Small Group Reporters

12:30pm-1:00pm

Lunch

Session 2: Tradeoffs, Uncertainty and Treatment Complexity for Patients and Providers

Session Facilitator: Marcus Escobedo 1:00pm-1:15pm

Short Talk: Multiple Chronic Conditions Guiding Principles, and Introduction to Session Topic

Cynthia Boyd

1:15pm-2:00pm Scenario Panel 360 View and Large Group Discussion: Patient Priority Care decision-making

Moderator: Marcus Escobedo

Primary Care (Geriatrics) Perspective: Mary Tinetti

Specialist (Cardiologist) Perspective: Mat Maurer

Caregiver Perspective: Nancy Lundebjerg

Patient Perspective: Richard Zorza

Goals Facilitator: Lauren Vo

2:00pm-2:40pm

Breakout Groups (See Session 2 Instructions for Breakout Group)

2:40pm-2:50pm Break

2:50pm-3:30pm

Report Out and Large Group Discussion Moderator: Marcus Escobedo Small Group Reporters

3:30pm-3:45pm

Break

Session 3: The “How”: Environment, Process and Tools

Session Facilitator: Tara Bristol Rouse 3:45pm-4:15pm

Short Talks: Overview of current environment, processes and tools and discussion of where we need to go

Patient and Caregiver Process: Wendy Nickel Training and other Processes: Aanand Naik

Decision Aids: Dan Matlock

4:15pm-4:30pm Short Panel Discussion Moderator: Tara Bristol Rouse Panelists: Wendy Nickel Aanand Naik Dan Matlock

4:30pm-5:00pm

Breakout Groups (See Session 3 Instructions for Breakout Groups)

5:00pm-5:30pm

Report Out and Large Group Discussion Moderator: Tara Bristol Rouse Small Group Reporters

5:30pm-6:00pm

Reception (Heart House)

6:00pm-7:00pm

Dinner (Heart House)

Patient Priority Care Research Agenda Meeting:

Wednesday, November 2nd, 2016 (Day 2) Overall Facilitator: Wendy Nickel

Time Agenda Item Presenter(s) 7:30am-8:00am Breakfast

8:00am-8:15am Recap from Day 1

Mike Rich

Session 4: What outcomes matter?

Session Facilitator: Rob Schreiber 8:15am-8:20am Introduction to Session

Rob Schreiber

8:20am-9:00am Short Talks: Measuring processes and outcomes for Patient Priority Care

Quality Metrics: Erin Giovenetti

Process Measures: Lillian Min

Measures That Matter: Orla Sheehan

Creating the Business Case: Tom Meehan

9:00am-9:30am

Breakout Groups (See Session 4 Instructions for Breakout Group)

9:30am-10:00am Report Out and Large Group Discussion

Moderator: Rob Schreiber

10:00am-10:15am Break

Session 5: Moving to Comparative Effectiveness Research (CER)

Session Facilitator: Tara Bristol Rouse

10:15am-11:00am Panel: Moving ideas to CER

Moderator: Tara Bristol Rouse Marcel Salive of National Institutes on Aging (NIA, NIH)

Amy Berman of the John A Hartford Foundation (JAHF) Richard Ricciardi of the Agency for Healthcare Research and Quality (AHRQ) Neeraj Arora of Patient Centered Outcomes Research Institute (PCORI) Susan Mende of the Robert Wood Johnson Foundation (RWJ)

Session 6: Prioritizing the Research Agenda and Setting up the Research Network

Session Facilitator: Gary Oftedahl 11:00am-12:00pm

Large Group Discussion: Prioritizing the Research Agenda

Moderator: Gary Oftedahl Mike Rich

12:00pm-12:30pm Setting up a research network for Patient Priority Care, Closing Remarks and Next Steps Dots for Voting: You will have 4 colored dots to vote on specific themes or questions you think are most important within each Session Red- Most important Yellow- 2nd most important Blue- 3rd most important Green- 4th most important

Caroline Blaum Stephen Hoy

Participant List

Name: Title/Affiliation Richard Allman, MD Chief Consultant, Geriatrics & Extended Care Services, U.S. Department of Veteran's

Affairs Katherine Alteneder, JD Coordinator, Self-Represented Litigation Network Neeraj Arora, MS, PhD Senior Program Officer, Improving Health Systems Team, Patient Centered Outcomes

Research Institute Michael Barr, MD, MBA Executive Vice President, Quality Measurement and Research Group, National

Committee for Quality Assurance Amy Berman, RN Senior Program Officer, The John A. Hartford Foundation Arlene Bierman, MD, MS

Director, Center for Evidence and Practice Improvement, Agency for Healthcare Research and Quality

Cherie C. Binns, RN Registered Nurse, Clinical Systems Consulting Caroline Blaum, MD, MS

Diane and Arthur Belfer Professor of Geriatrics; Director, Director Division of Geriatric Medicine and Palliative Care, NYU School of Medicine

Kelli Bohannon Associate Director, American College of Cardiology Cynthia Boyd, MD Associate Professor of Medicine, Division of Geriatric Medicine and Gerontology, Johns

Hopkins University School of Medicine Tara Bristol Rouse Faculty, Patient and Family Centered Care Partners Victoria Dickson, PhD, CRNP

Associate Professor, Rory Meyers College of Nursing, NYU

Lilian Dindo, PhD Assistant Professor, Menninger Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine

John Dodson, MD, MPH Assistant Professor of Medicine and Population Health; Director, Geriatric Cardiology Program; Leon H. Charney Division of Cardiology; New York University School of Medicine

Tom Edes, MD, MS Executive Director, Geriatrics & Extended Care Services, U.S. Department of Veteran's Affairs

Marcus Escobedo, MPA Senior Program Officer, John A. Hartford Foundation Jessica Esterson, MPH Project Director, Yale Geriatrics, Yale School of Medicine Rosie Ferris, MPH Senior Research Coordinator, Division of Geriatric Medicine and Palliative Care, NYU

School of Medicine Peter Fielding Consultant Daniel Forman, MD Professor of Medicine, University of Pittsburgh Erin Giovannetti, MD Research Scientist, National Committee for Quality Assurance Marian Grant, DNP, RN Director of Policy and Professional Engagement, (NP), The Coalition to Transform

Advanced Care Jerry Gurwitz, MD Executive Director, Meyers Primary Care Institute Linda Hamilton Patient/Caregiver Representative AU Health Gene Harkless, DNSc, APRN

Associate Professor, Chair of Department of Nursing, University of New Hampshire

Maureen Henry, JD Research Scientist, National Committee for Quality Assurance Kizzy Hernandez-Bigos, BA

Patient Priority Facilitator, ProHealth Physicians

Libby Hoy Founder and CEO, PFCCpartners Stephen Hoy Director of Strategy and Programs, PFCCpartners Kathleen Kelly, MPA Executive Director, Family Caregiver Alliance and the National Alliance on Caregiving Hibah Khan, MPA Administrative Coordinator, Division of Geriatric Medicine and Palliative Care, NYU

School of Medicine

Ben Kligler, MD, MPH National Director for Integrative Health, Veterans Health Administration Yasmeen Long, MA Program Officer, Eugene Washington PCORI Engagement Awards, Patient-Centered

Outcomes Research Institute Nancy Lundebjerg, MPA Chief Executive Officer, American Geriatrics Society Dan Matlock, MD, MPH Associate Professor, Medicine-Geriatrics, University of Colorado Mathew Maurer, MD Professor of Clinical Medicine, Columbia University Tom Meehan, MD, MPH Executive Director, Connecticut Center for Primary Care Susan Mende, BSN, MPH

Senior Program Officer, Robert Wood Johnson Foundation

Lillian Min, MD, MSHS Associate Professor, Geriatric Medicine, University of Michigan Brittany Morrongiello Program Coordinator, Division of Geriatric Medicine and Palliative Care, NYU School of

Medicine Christine Mulvey Project Manager, ProHealth Physicians & Connecticut Center for Primary Care Aanand Naik, MD Associate Professor of Medicine and Health Policy, Houston Center for Innovations in

Quality, Safety, and Effectiveness Wendy Nickel, MPH Director, Center for Patient Partnership in Healthcare, American College of Physicians Gary Oftedahl, MD Collaborator, Oftedahl Consulting, Inc. Lyn Paget Managing Partner, Health Policy Partners Philip Posner, PhD Ambassador, Patient-Centered Ooutcomes Research Institute Richard Ricciardi, PhD, MS

Director, Division of Practice Improvement, Agency for Healthcare Research and Quality

Mike Rich, MD Professor of Medicine, Washington University in St. Louis Jonathan Rosen, MD Family Practitioner, Family Medical Group, Bristol, CT; Primary Care Clinical Champion,

Patient Priority Care Marcel Salive, MD, MPH Program Officer, Division of Geriatrics and Clinical Gerontology, National Institute on

Aging/NIH Robert Schreiber, MD Medical Director, Evidence-based Programs, Hebrew SeniorLife, Healthy Living Center of

Excellence Orla Sheehan, MD, PhD Research Associate, Center on Aging and Health, Division of Geriatrics and Gerontology,

Johns Hopkins University Elizabeth Sheley Medical Writer Rani Snyder, MPA Program Director, The John A. Hartford Foundation, Inc. Michael Steinman, MD Professor, School of Medicine, University of California, San Francisco Eileen Sullivan-Marx, PhD, RN

Dean & Erine Perkins McGriff Professor, Rory Meyers College of Nursing, NYU

Mary Tinetti, MD Gladys Philips Crofoot Professor of Medicine and Public Health; Chief, Yale Geriatrics, Yale School of Medicine

Janice Tufte Consulter, Hassanah Consulting Lauren Vo, APRN Patient Priority Facilitator and APRN, ProHealth Physicians Nanette Wenger, MD Professor of Medicine (Cardiology) Emeritus, Emory University School of Medicine Sue Zieman, MD Medical Officer, Division of Geriatrics and Clinical Gerontology Joan Zorza, Esq Co-Founder, Zorza Associates Richard Zorza, Esq Co-Founder, Zorza Associates

Patient Priority Care Fall Research Agenda Meeting November 1st and 2nd, 2016

Heart House, 2400 N St NW, Washington, DC 20037

Breakout Groups Breakout Group: #1 Room: NPR

1. John Dodson (Moderator) 2. Katherine Alteneder 3. Amy Berman 4. Cherie C. Binns 5. Cynthia Boyd 6. Linda Hamilton 7. Gene Harkless 8. Yasmeen Long 9. Richard Ricciardi 10. Jonathan Rosen 11. Orla Sheehan

Breakout Group: #2 Room: 114

1. Tara Bristol Rouse (Moderator) 2. Marcus Escobedo 3. Neeraj Arora 4. Erin Giovannetti 5. Jerry Gurwitz 6. Kizzy Hernandez-Bigos 7. Mary Herold 8. Dan Matlock 9. Mathew Maurer 10. Robert Schreiber 11. Richard Zorza

Breakout: #3 Room: 116

1. Lilian Dindo (Moderator) 2. Vicky Dickson (Moderator) 3. Michael Barr 4. Arlene Bierman 5. Caroline Blaum 6. Peter Fielding 7. Lillian Min 8. Gary Oftedahl 9. Marcel Salive 10. Janice Tufte 11. Nanette Wenger

Breakout Group: #4 Room: 118

1. Lauren Vo (Moderator) 2. Maureen Henry 3. Stephen Hoy 4. Kathleen Kelly 5. Ben Kligler 6. Philip Posner 7. Mike Rich 8. Rani Snyder 9. Michael Steinman 10. Mary Tinetti 11. Yasmin Yusuf

Breakout Group: #5 Room: NPR

1. Daniel Forman (Moderator) 2. Marian Grant 3. Nancy Lundebjerg 4. Tom Meehan 5. Susan Mende 6. Christine Mulvey 7. Wendy Nickel 8. Lyn Paget 9. Eileen Sullivan-Marx 10. Joan Zorza 11. Aanand Naik 12. Richard Allman

Group Scribes:

Group #1: Jessica Esterson/Christine Mulvey Group #2: Brittany Morrongiello Group #3: Hibah Khan Group #4: Kelli Bohannan Group #5: Elizabeth Sheley



Session 1: Changing the Provider/Patient Relationship to Achieve Patient Priority Care

Instructions for Breakout Groups Background on session: People with multiple chronic conditions often receive healthcare that is fragmented, burdensome, and doesn't always address what matters most to them. Large-scale, multi-stakeholder efforts are underway to improve care for such patients by refocusing care from treating individual diseases in isolation, to achieving patients' specific health priorities; that is, moving from disease-based to patient priorities-directed care. The specific purpose of this panel is to discuss current barriers, solutions and research questions to change the patient/provider relationship to achieve patient priority care. Structure of Breakout Group: A small group discussion to consider questions below, and produce research questions/theme deliverables. Deliverables for Report-Out: Use the set of questions below to develop a clear set of up to 5 (less is more) defined research questions, which can contain sub questions. If a thought can’t be turned into a question, it can remain a theme to pose to the larger group. Questions to Consider:

1. What are the current barriers to a provider/patient relationship to facilitate patient priority care?

2. What should the patient/provider relationship look like to facilitate and achieve patient priority care?

3. What does the patient/family/caregiver need to know to change the relationship?

4. What does the provider need to know to change the relationship?

5. What is needed to change the culture to support the new patient provider relationship?



Session 2: Tradeoffs, Uncertainty and Treatment Complexity for Patients and Providers

Instructions for Breakout Groups Background on session: People with multiple chronic conditions often receive healthcare that is fragmented, burdensome, and doesn't always address what matters most to them. Large-scale, multi-stakeholder efforts are underway to improve care for such patients by refocusing care from treating individual diseases in isolation, to achieving patients' specific health priorities; that is, moving from disease-based to patient priorities-directed care. The specific purpose of this panel is to discuss current barriers, solutions and research questions to generate the evidence to make decisions with patients, families and caregivers in the face of uncertainty, tradeoffs and treatment complexity to achieve patient priority care. Structure: Participants take 5 minutes to write research questions/themes are sticky notes and place them on the large notepad. Facilitator reads through sticky notes with the group, and categorizes them by similarity. Small group discusses each note and groups them into 8 (or fewer) research questions/themes to present to large group. Deliverables for Report-Out: Use the set of questions below to develop a clear set of up to 5 (less is more) defined research questions, which can contain sub questions. If a thought can’t be turned into a question, it can remain a theme to pose to the larger group. Questions to Consider:

1. How do tradeoffs, uncertainty and treatment complexity inform clinical decision-making for patients, caregivers and providers?

2. What do we need to know to help with the challenges around day to day decision making?

3. What questions need to be answered in order to provide this kind of care?



Session 3: The “How”: Environment, Process and Tools

Instructions for Breakout Groups

Background on session: People with multiple chronic conditions often receive healthcare that is fragmented, burdensome, and doesn't always address what matters most to them. Large-scale, multi-stakeholder efforts are underway to improve care for such patients by refocusing care from treating individual diseases in isolation, to achieving patients' specific health priorities; that is, moving from disease-based to patient priorities-directed care. The specific purpose of this breakout group is to discuss the “how”: how can the environment, processes and tools be used to support and achieve patient priority care? Structure: A small group discussion to consider questions below, and produce research questions/theme deliverables. Deliverables for Report-Out: Use the set of questions below to develop a clear set of up to 5 (less is more) defined research questions, which can contain sub questions. If a thought can’t be turned into a question, it can remain a theme to pose to the larger group. Questions to Consider:

1. What is needed to prepare patients, caregivers, clinicians, administrators and researchers for patient priority care?

2. What is the best way to communicate with patients/families/caregivers?

3. Do current tools facilitate patient priority care? If not, how can they be changed for the needs of adults with multiple chronic conditions?

4. Who needs to be trained? How should they be trained? What research is needed to support training?



Session 4: What outcomes matter?

Instructions for Breakout Groups

Background on session: People with multiple chronic conditions often receive healthcare that is fragmented, burdensome, and doesn't always address what matters most to them. Large-scale, multi-stakeholder efforts are underway to improve care for such patients by refocusing care from treating individual diseases in isolation, to achieving patients' specific health priorities; that is, moving from disease-based to patient priorities-directed care. The specific purpose of this breakout group is to discuss what outcomes and processes matter for patient priority care. Structure: Participants take 5 minutes to write research questions/themes are sticky notes and place them on the large notepad. Facilitator reads through sticky notes with the group, and categorizes them by similarity. Small group discusses each and comes to consensus on 8 (or fewer) research questions/themes to present to large group based on below questions. Deliverables for Report-Out: Use the set of questions below to develop a clear set of up to 5 (less is more) defined research questions, which can contain sub questions. If a thought can’t be turned into a question, it can remain a theme to pose to the larger group. Questions to Consider: 1. What outcomes are most important to determine success of patient priority care?

2. Do the right outcomes exist? What are current outcomes missing?

3. How can we use appropriate outcomes to create a business case for patient priority care?

Patient Priority Care Research Agenda and Community

We are implementing a two-year project (January 2016-December 2017), funded by the PCORI Engagement Award Program, that involves multiple stakeholders, particularly patients, caregivers and researchers, but also clinicians, policy makers, healthcare system representatives, and payers, to develop a research agenda, and community to implement patient goals and priorities directed, aligned care.

Project Background & Ongoing Activities

Patients with multiple chronic conditions (MCC) receive care that is fragmented and inefficient that often does not address what really matters to them. A major cause of the current burdensome, fragmented and expensive care is that the many clinicians caring for a patient concentrate on their own sets of disease specific outcomes and not on the health outcome goals and care preferences of patients. Demand is increasing for a less burdensome, fragmented, and expensive approach that is more patient-centered, particularly for persons with multiple chronic conditions.

From January, 2014 through June, 2015, a broad group of stakeholders, including patients, caregivers, clinicians, researchers, payers and policy makers, came together to articulate a care approach for people with MCC that aligns primary and specialty care to focus on patients’ health outcomes goals and care preferences. This effort, supported jointly by The John A Hartford Foundation (JAHF) and Patient Centered Outcomes Research Institute (PCORI) and known as “Carealign,” consisted of workgroups and advisory panels that developed guiding principles and broad themes to define and build out aligned and goals-directed care.

We are now deeply involved in the next phase of this project to develop aligned and goals directed care, i.e., Patient Priority Care (PPC). We have received generous funding from PCORI, The John A Hartford Foundation, the Robert Wood Johnson Foundation and the Gordon and Betty Moore Foundation that support the ongoing activities of the “Carealign” project, outlined briefly below.

Developing a research agenda and research network to prepare Patient Priority Care for Comparative Effectiveness Research. This is the goal of the PCORI Engagement Award.

Implementing a Pilot Intervention at ProHealth Physicians, a primary care organization in central CT. We are enrolling up to 200 patients in a primary care clinic who experience patient priority care. Patients participate in sessions with goals facilitators to identify their values, health outcome goals and care preferences, and primary care physicians and consulting cardiologists will be prepared and supported to reorganize their clinical decision making to translate disease specific care to care that addresses patients’ health care priorities and preferences.

Scaling up to develop ways to prepare patients, caregivers and clinicians for patient priority aligned care. The aim is to develop and scale tutorials for clinicians to a national level and make them available via interactive web based programs, including case scenarios, videos, and interactive training. The tutorials will facilitate and encourage clinicians to translate disease specific clinical decision making to decision-making that aligns with patients’ health priorities and care preferences.

Increasing awareness and demand through a comprehensive communications strategy. Working with a communications firm, we are developing a web site, social and traditional media presence and branding.

The PCORI Engagement Award: Developing the Research Agenda and Community Project Lead: Caroline Blaum, NYU Co-Leads: Libby Hoy, CEO, PFCCpartners; Michael Rich, Washington University Consultant: Wendy Nickel, MPH, ACP

The Patient and Family Centered Care Partners (PFCCpartners), the American College of Cardiology (ACC), the American College of Physicians (ACP), the American Geriatrics Society (AGS), and the JAHF, are partners on this project. The project is convening patients, caregivers, clinicians, researchers and other stakeholders, to investigate, articulate, and develop a way to address the array of research questions associated with aligned, patient goals-directed care, particularly how to translate disease specific care into care directed by the goals and preferences of patients. This project will include a series of virtual and in-person meetings over 2 years with the following Specific Aims:

1) Aim 1: Design a research agenda in patient centered outcomes research (PCOR) and comparative effectiveness research (CER) around developing and implementing goals-directed care that focuses specifically on translating disease specific care into aligned patient health outcome goals-directed care. We will begin with cardiovascular care, reviewing the current evidence that is applicable to aligned, goals-directed care, and developing a research agenda for primary specialty alignment around goals-directed care that will also inform such research for other specialties.

2) Aim 2: Bring a new specialty, general surgery, into the goals-directed care initiative. Develop a research agenda around the steps needed for general surgeons to align care around patient health outcomes goals. This will be “proof of concept” about the research needed to develop aligned, goals-directed care for multiple specialties.

3) Aim 3: Identify and build a collaborative research network in aligned goals-directed care that involves patients, caregivers, providers and other stakeholders in order to maintain momentum and turn research questions into feasible and fundable PCOR/CER studies.

Patient Priority Care Research Agenda and Community

I. Mission: We are committed to creating a research agenda for patient priority aligned care facilitated by a research community inclusive of multiple stakeholders.

II. Vision: To change the culture of healthcare for older adults with multiple chronic conditions (MCC) so that care is aligned with their health outcome goals and priorities.

III. Scope of the Community: A community of diverse stakeholders including researchers, patients, families, policy makers, caregivers, clinicians, payers, funders and other stakeholders representing and/or caring for older adults with MCC.

IV. Community Structure 1. Interactive technology platform to host collaborative space. 2. Continuous community development, recruitment, encouragement, and gratitude for

participation. 3. Partnerships with a broad range of stakeholders, building on the existing networks of the

Planning Committee. 4. Collaborative community interactions including the guidance of the researchers to translate

research priorities into a comprehensive research agenda. V. Community Stakeholder Agreements

1. Commit to respectful collaboration with all stakeholders in the community. 2. Actively inform the co-design of the research agenda. 3. Focus on the translation of disease specific care into patient priority aligned care.

VI. Contributions: 1. Co-Investigator Team: Identify and invite stakeholders to participate in meetings and

dialogue about patient priority directed care, cultivate overall plan for development of research community and agenda, develop online community, coordinate and host in person meetings and maintain focus on the mission of this award across all community and research agenda development activities.

2. Planning Committee Team: Participate in 2-4 in person meetings, monthly planning meetings (virtual) and supplementary calls as needed to identify existing networks from area of expertise to contribute to the broader Stakeholder Community and contribute intellectually to development of research agenda.

3. Stakeholder Community: Utilize web based portal to suggest research questions, react to others’ ideas and identify the research needs of older adults with MCC and possibly attend an in person event to co-design the research agenda.

VII. Guiding Definitions 1. Patient Priority Aligned Care is based on patient identified health outcome goals and

priorities, which are rooted in a person’s values, culture and preferences, and form the basis for the alignment of primary and specialty care.

2. Stakeholder Engagement is the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results. We believe that such engagement can influence research to be more patient centered, useful, and trustworthy

and ultimately lead to greater use and uptake of research results by the patient and broader healthcare community (based on PCORI Definition).

3. Patient Directed Health Outcome Goals are high priority health outcomes that a person hopes to achieve with their health care team. To inform care, these health outcome goals must be specific, measurable, and actionable (e.g. pain controlled sufficiently to allow five hours of sleep most nights; able to walk at least one block). Health outcome goals are distinct from behavioral goals such as stopping smoking or losing weight and from disease goals such as improving HbA1c or blood pressure. These goals are formed within the context of each patient’s culture, values and belief structure.

4. Care Preferences are the activities, behaviors and care workload involved in being a patient or caregiver that is reasonable for a patient to take on in the context of their lives, which is influenced by the culture, values and beliefs of the individual.

Patient Priority Aligned Care Research Agenda Community

Broader Community* informing agenda through

online platform

Stakeholders* informing agenda through

virtual and in-person meetings

Planning Committee

Support Project Planning Connectors to Build the

Community

Co-Investigators Maintain Focus on the Mission, Vision of the

Project

*Includes researchers, patients, families, policy makers, caregivers, clinicians and other stakeholders.

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