1. Patient and Stakeholder Engagement in Research
Chinenye Anyanwu, PharmD, MPH
Engagement Officer
Patient & Public Engagement
P2P Tier A Training
June 14, 2018

2. Discussion for Today What is PCORI? Better Research Through Engagement
Facilitating patient and stakeholder engagement in research
Q&A

3. What is PCORI?

4. PCORI’s Mission and Strategic Goals
PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.
Strategic Goals:
Increase quantity, quality, and timeliness of useful, trustworthy research information available to support health decisions
Speed the implementation and use of patient-centered outcomes research evidence
Influence research funded by others to be more patient-centered

5. PCORI Funds Patient-Centered Outcomes Research
PCOR is a relatively new form of CER that….
Considers patients’ needs and preferences, and the outcomes most important to them
Investigates what works, for whom, under what circumstances
Helps patients and other healthcare stakeholders make better-informed decisions

6. We Fund Research That… Meets these criteria:
Potential for the study to fill critical gaps in evidence
Addresses a clinical uncertainty or decisional dilemma experienced by patients and other stakeholders
Potential for the study findings to be adopted into clinical practice and improve delivery of care
Has the potential to lead to improvements in clinical practice and patient outcomes
Scientific merit (Research design, analysis, and outcomes)
Has a research design of sufficient technical merit to ensure that the study goals will be met
Investigator(s) and environment
The proposed project has a team with appropriate investigators (e.g. qualifications and experience), as well as an environment with sufficient capacity (e.g. resources, facilities, and equipment)
Patient-centeredness
Focuses on improving patient-centered outcomes and employs a patient-centered research design
Patient and stakeholder engagement
Includes patients and other stakeholders as partners throughout the entire research process

7. Engagement at PCORI

8. Better Research Through Engagement

9. Why Engage?
To influence research to be patient-centered, relevant, and useful
To establish trust and a sense of legitimacy in research findings
To encourage successful uptake and use of research results

10. Engagement makes a Difference in PCORI Projects
Better understanding of stakeholders’ personal perspectives (e.g., priorities, experiences)
Refined study that is more patient-centered
Research questions
Interventions and/or comparators
Outcomes and measures
Data collection
Recruitment/retention strategies
Enhanced study participant enrollment rates
Note: Key themes from project years 1 and 2 (N = 258 awardees, 254 partners)
Themes mentioned in >10% of responses of both partners and awardees.

11. Most Common Effects of Engagement on Partners
Established new relationships
Improved personal health management
Made a difference in the lives of others
Personal growth or self-improvement
Gained new knowledge and insights about research
New professional opportunities
Belief in patient/stakeholder representation in research
“Understanding the various health disparities leading to diabetes, kidney disease has made me assess my personal life, my level of physical activity and my food intake. I have made changes in my lifestyle which include exercising 3 x per week and encouraging my family to take part in physical activities such as hiking, basketball and so forth… This was an eye opener.”
–Other type of Stakeholder

12. What do we mean by Engagement?

13. Meaningful Partnerships

14. What We Mean by Engagement…
Meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process
Detailed, well-thought-out, and creative engagement plan
Diverse groups of stakeholders
Engagement takes many shapes and sizes, not one size fits all!

15. Core Engagement Principles
Reciprocal relationships
Co-learning
Partnership
Trust, transparency, and honesty

16. Building Effective Partnerships
Source: Schools in Partnership

17. Engagement Continuum
Adapted from Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic. See also Arnstein SR. A ladder of citizen participation. Journal of the American Planning Association. 1969;35:216–24

18. Facilitating Patient and Stakeholder Engagement in Research

19. “Engagement is hard…”
Relationship building, maintaining throughout and between projects
Budgeting for engagement expenses
Feasibility of incorporating feedback
Training and skill development needs (for partners and researchers)
Compensation
Determining level and depth of engagement of stakeholders
Engaging hard to reach and vulnerable populations

20. PCORI Engagement Rubric–A Valuable Resource
Provides practical guidance to applicants, merit reviewers, awardees, and engagement/program officers on effective engagement in research
Planning the Study: How patient and stakeholder partners will participate in study planning and design
Conducting the Study: How patient and stakeholder partners will participate in the conduct of the study
Disseminating the Study Results: How patient and stakeholder partners will be involved in plans to disseminate study findings and ensure that findings are communicated in understandable, usable ways
PCOR Engagement Principles: Reciprocal relationships, co-learning, partnership, trust, transparency, honesty

21. Engagement Officers Support PCORI’s organizational engagement efforts
Support active portfolio management by:
Helping awardees to outline engagement milestones
Participating in the awardee calls and/or separate calls with key patient and stakeholder partners
Serving as a resource to troubleshoot engagement challenges and facilitating communication between awardees around engagement challenges
Gathering promising engagement practices from the portfolio and linking awardees to opportunities to highlight promising practices in engagement

22. Updated Engagement Plan
Background Information (Groups Engaged):
Goals and/or Purpose Statement
Partner Roster, Bios and Roles
Dedicated Engagement Leadership Staff
Engagement Structure Diagram
Proposed Meeting and Key Activity Timeline
Partner Preparation and Training
Process and Outcomes Monitoring

23. Understanding The Science of Engagement
4/11/2016
Understanding The Science of Engagement
What is happening?
Build on existing sources of data to describe engagement in PCORI projects more deeply, including how partnerships are initiated and fostered
Further explore the influence and impact of engagement on research – what are we learning about it and what is happening because of it.
How is it happening & how is it influencing results?
Explore how the influence is occurring, test associations between different types of engagement and specific impacts of engagement, better understand how people are making engagement happen.
Practice-Based Knowledge
Literature and Portfolio Analysis
Knowledge & Information that PCORI translates into what people can use
Undertaking a more systematic understanding of that in the IDIQ
Identify facilitators of and challenges to research engagement

24. Support and Resources to Build Partnerships, Infrastructure, Capacity and Community
Training and Tools:
Engagement Development Funding:
Networking,, Learning and Sharing

25. Engagement is hard….but not Impossible!
Communication is KEY!
Mistrust takes seconds to form and years to deconstruct
Training, training, training!
Engagement is relational, not transactional
Create equity
Mentorship
Culture shift—Researchers are afraid of patients, patients are afraid of researchers

26. Engagement Resources
PCORI’s Engagement Rubric:
Sample Engagement Plans: Sample-Engagement-Plans.pdf  
Compensation Framework: Compensation-Framework-for-Engaged-Research-Partners.pdf
Engagement Budgeting: Budgeting-for-Engagement-Activities.pdf
Engagement in Research Website: opportunities/what-we-mean-engagement         
Methodology Report: Methodology-Report.pdf
PCORI In Practice Webinar Series: involved/participate-pcori-events/pcori-practice     

27. Additional Resources Community Campus Partnerships for Health
INSPIRE Repository (Initiative to Support Patient Involvement in Research)
Wisconsin Network for Research Support (WINRS)

28. Thank You! Chinenye Anyanwu, PharmD, MPH Engagement Officer, Public and Patient Engagement |