Organization Logo Here (150 dpi Resolution jpeg or png file) The 2015 PCORI Annual Meeting: Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community The 2015 PCORI Annual Meeting: Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community Evaluating Engagement in Research: Promising Practices from PCORI’s Portfolio Laura Forsythe, PhD, MPH Associate Director, Evaluation & Analysis Michelle Johnston-Fleece, MPH Engagement Officer, PCORI October 7, 2015
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Evaluating Engagement in Research: Promising …...Recruitment & Retention • Recruitment procedures more responsive to patient needs • Making more potential participants aware
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Organization Logo Here(150 dpi Resolution jpeg or
png file)
The 2015 PCORI Annual Meeting:
Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community
The 2015 PCORI Annual Meeting:
Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community
Evaluating Engagement in
Research: Promising Practices
from PCORI’s Portfolio
Laura Forsythe, PhD, MPH
Associate Director, Evaluation & Analysis
Michelle Johnston-Fleece, MPH
Engagement Officer, PCORI
October 7, 2015
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What is Research Engagement?
Patient and other stakeholder involved in
• Formulating research questions;
• Defining essential characteristics of study design, participants, and comparators;
• Identifying and selecting outcomes that matter to patients;
• Monitoring study conduct and progress; and/or
• Designing and carrying out plans for dissemination and implementation activities.
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Why is Research Engagement
Important?
• Early evidence suggests that engagement may result in
– Improved understanding of study populations’ needs
– More relevant research studies
– Better understanding of research results
• Yet, little evidence exists about the most promising practices for how to engage and for the effects of engagement in terms of the research process, uptake of findings, and impact on health
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Who Are Our Stakeholders?
Purchasers
Caregivers/Family MembersPayers
Patients/Consumers
Clinicians
Training Institutions
Policy Makers
Hospitals/Health SystemsIndustry
Patient/Caregiver Advocacy Organizations
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Objectives for Measuring
Engagement
• Describe engagement in PCORI funded projects
• Evaluate impact on PCORI strategic goals
• Guide current awardees, future applicants, and others
interested in PCOR
• Support project progress based on learnings
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Conceptual Model of PCOR
PCOR Principles
Frank L, Forsythe L, Ellis L, Schrandt S, Sheridan S, Gerson J, Konopka K, Daugherty S. Conceptual and Practical Foundations of Patient Engagement in Research at the Patient-
Centered Outcomes Research Institute Plans. Quality of Life Research 2015. 24(5):1033-1041 DOI 10.1007/s11136-014-0893-3
Actions
OutcomesFoundational Elements
• Readiness
• Channels
• Policies
• Resources
• Near-term
• Intermediate
• Long-term
• Initiate and maintain
partnerships
• Communicate
• Capture and use
perspectives
• Ensure influence
• Train
• Share
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Additional Engagement Resources
• PCORI has developed other resources to help guide your engagement activities, housed on the “What We Mean by Engagement” page on the PCORI website:
1. Staley K. Exploring impact: public involvement in NHS, public health and social care research. Eastleigh, United Kingdom: INVOLVE; 2009
2. Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H: The PIRICOM Study: A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patients and Public Involvement in Health and Social Care Research. Warwick: University of Warwick.
3. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P, Eton D, Sloan J, Montori V, Asi N, Dabrh AM, Murad MH. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014 Feb 26;14:89. doi: 10.1186/1472-6963-14-89.
4. Forsythe LP, Szydlowski V, Murad MH, Ip S, Wang Z, Elraiyah TA, Fleurence R, Hickam DH. A systematic review of approaches for engaging patients for research on rare diseases. J Gen Intern Med. 2014 Aug;29 Suppl3:S788-800. doi: 10.1007/s11606-014-2895-9.
5. Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4(2):133-45. doi: 10.2217/cer.14.79.
6. Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L. Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned. J Gen Intern Med. 2015 Jul 10.
7. Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, Lau J. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med. 2014 Dec;29(12):1692-701. doi: 10.1007/s11606-014-2878-x. Epub 2014 Jun 4.
8. Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, Conway PH, Daudelin D, MorratoEH, Leslie LK. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med. 2012 Aug;27(8):985-91. doi: 10.1007/s11606-012-2037-1. Epub 2012 Apr 13.
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The 2015 PCORI Annual Meeting:
Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community
The 2015 PCORI Annual Meeting:
Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community