Promising Practices of
Meaningful Engagement in the
Conduct of Research
September 19, 2013
Webinar/Teleconference

Promisi...
Agenda

1:00-1:10 pm

1:10 - 1:25 pm

Welcome and Introductions

PCORI Research Team Presentation:
Ken Wells, UCLA, and pa...
Webinar Learning Objectives
To learn from PCORI funded research teams about
successful practices of patient and stakeholde...
Why PCORI?
Research has not
answered many questions
patients face
People want to know which
treatment is right for them
Pa...
About PCORI
“The purpose of the Institute is to assist
patients, clinicians, purchasers, and policymakers in making inform...
Our Mission
PCORI helps people make
informed health care
decisions, and improves
health care delivery and
outcomes, by pro...
Our Focus

Comparative Clinical Effectiveness Research
 Patient-centered
 Answering questions that matter to patients an...
We Use Engagement as a Path to
Rigorous Research

Promising Practices of Meaningful Engagement in the Conduct of Research
...
What Does Patient and Stakeholder
Engagement in Research Look Like?
What are some challenges you encountered in integratin...
Community-Partnered Participatory
Research: The What, How, and Why
of Community Engagement to Reduce
Depression Disparitie...
Challenges of Client Engagement in
Mental Health Disparities Research
• Historical legacy of research abuses of minority
p...
Community-Partnered Participatory
Research (CPPR)
CPPR Principles:
• Transparency
• Respect
• Power sharing
• Co-leadershi...
Stakeholder Engagement: Circle of Influence
Model© 2002

Community
Resident
Experts

Partners

Resident
Experts

Community...
New Vision Church of
Jesus Christ

Working together in an equal partnership
to learn how to improve depression care
and bu...
Methodology Standards Associated with
Patient-Centeredness (Current)
• PC-1 Engage people representing the population of
i...
Example: Community Input, Randomization
• Two-way knowledge exchange (“book club”) format
o Randomization, validity
o Comm...
CPIC Intervention Results and PCORI
Research Questions
• Community Engagement and Planning Relative to Resources for
Servi...
PCORI Client Engagement Activities
• CPIC Council directs all research activities:
• DMH stakeholder coalition supports CP...
Thank you to Partners and Funders!

Funders: Patient Centered Outcomes Research Institute (PCORI);
National Institute of M...
Cognitive Outcomes in Pediatric
Localization Related Epilepsy (COPE)
PCORI Research Priority: Assessment of Prevention,
Di...
AED Selection – How to Choose?
 Stop seizures!
 Other factors
 Cost
 Ease of dosing/administration
 Side-effect profi...
Multiple Stakeholders
 Children (and families)
with LRE
 Physicians and
Healthcare Professionals
 Epilepsy Advocacy
Gro...
Epilepsy Partnership
 Epilepsy Foundation
 Provide web-based resources
for education
 Participate in Public Policy Inst...
COPE Executive Committee
 Clinical Core
 David Loring, PhD
 Kimford Meador, MD

 Patient Stakeholder
Representative
 ...
COPE Summary
 Will establish if one AED maximally preserves
cognition
 Will establish behavior side effect risk
 Charac...
Share your thoughts on engagement in
research!
Submit your comments and questions on PCORI’s website
until September 20 at...
Question and Answer Session

Promising Practices of Meaningful Engagement in the Conduct of
Research

27
Thank you for joining us!
Please complete the brief survey about the webinar.
Your feedback is important to us and we look...
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Promising Practices of Meaningful Engagement in the Conduct of Research

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Promising Practices of Meaningful Engagement in the Conduct of Research

  1. 1. Promising Practices of Meaningful Engagement in the Conduct of Research September 19, 2013 Webinar/Teleconference Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 1
  2. 2. Agenda 1:00-1:10 pm 1:10 - 1:25 pm Welcome and Introductions PCORI Research Team Presentation: Ken Wells, UCLA, and patient partners Loretta Jones and Pluscedia Williams 1:25 – 1:40 pm PCORI Research Team Presentation: David Loring, Emory University, and patient partner Brandy Parker 1:40 – 2:00 pm Live Q&A Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 2
  3. 3. Webinar Learning Objectives To learn from PCORI funded research teams about successful practices of patient and stakeholder engagement in all stages of the research process; To address major concerns and barriers to engaging patients and stakeholders in research; and To inform the public on ways to get involved with PCORI and our work. Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 3
  4. 4. Why PCORI? Research has not answered many questions patients face People want to know which treatment is right for them Patients need information they can understand and use Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 4
  5. 5. About PCORI “The purpose of the Institute is to assist patients, clinicians, purchasers, and policymakers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations, and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments…” “The Institute shall establish a standing methodology committee to…develop and improve the science and methods of comparative clinical effectiveness research” Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 5
  6. 6. Our Mission PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 6
  7. 7. Our Focus Comparative Clinical Effectiveness Research  Patient-centered  Answering questions that matter to patients and other clinical decision makers  Comparisons of outcomes that matter to patients Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 7
  8. 8. We Use Engagement as a Path to Rigorous Research Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 8
  9. 9. What Does Patient and Stakeholder Engagement in Research Look Like? What are some challenges you encountered in integrating and practicing engagement in research? How exactly do you engage? How did you initiate this partnership? What does engagement mean to you? How does it impact your research? What are the three main pieces of advice you would give to researchers and patient/community partners interested in getting involved in PCOR? Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 9
  10. 10. Community-Partnered Participatory Research: The What, How, and Why of Community Engagement to Reduce Depression Disparities Kenneth Wells, Loretta Jones, and Pluscedia Williams CPIC Council, September 19, 2013 Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 10
  11. 11. Challenges of Client Engagement in Mental Health Disparities Research • Historical legacy of research abuses of minority populations • Distrust of government programs and health services • Social stigma and discrimination based on mental health diagnosis and treatment • Research leadership offers opportunities to contribute, but potential public exposure; clients may be unprepared • Community-based participatory research is recommended to build trust in research and services Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 11
  12. 12. Community-Partnered Participatory Research (CPPR) CPPR Principles: • Transparency • Respect • Power sharing • Co-leadership • Two-way knowledge exchange Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 12
  13. 13. Stakeholder Engagement: Circle of Influence Model© 2002 Community Resident Experts Partners Resident Experts Community Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 13 L. Jones, MA; D.S. Martins, MD; Y. Pardo; R. Baker; and K. C. Norris, MD
  14. 14. New Vision Church of Jesus Christ Working together in an equal partnership to learn how to improve depression care and build community strength DEPARTMENT OF MENTAL HEALTH Watts Counseling and Learning Center Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 14
  15. 15. Methodology Standards Associated with Patient-Centeredness (Current) • PC-1 Engage people representing the population of interest and other relevant stakeholders in ways that are appropriate and necessary in a given research context. Stakeholders can be engaged in the processes of: o Formulating research questions; o Defining essential characteristics of study participants, comparators, and outcomes; o Identifying and selecting outcomes that the population of interest notices and cares about (e.g., survival, function, symptoms, health-related quality of life) and that inform decision making relevant to the research topic; o Monitoring study conduct and progress; and o Designing/suggesting plans for dissemination and implementation activities. Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 15
  16. 16. Example: Community Input, Randomization • Two-way knowledge exchange (“book club”) format o Randomization, validity o Community trust/Tuskegee legacy • Council community leaders explicitly used experience to improve program matching for randomization • Community leaders selected seed numbers to initiate randomization • Academic & community co-presenters of design o Community conferences o American Statistical Association Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 16
  17. 17. CPIC Intervention Results and PCORI Research Questions • Community Engagement and Planning Relative to Resources for Services (6-month outcomes) o Increased staff participation in trainings o Improved mental health, quality of life, and physical activity o Reduced homelessness risk factors o Reduced behavioral health hospitalizations o Shifted outpatient depression services away from specialty medication visits and towards primary care, faith-based, and park services for depression • Do client outcome benefits persist over 3 years? • How do clients make trade-offs among such diverse outcomes? • How can systems respond to clients’ values for outcomes? Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 17
  18. 18. PCORI Client Engagement Activities • CPIC Council directs all research activities: • DMH stakeholder coalition supports CPIC Council • Partnered workgroups review surveys, train interviewers, participate in analysis: • “Book club” for group review of client and provider narratives • Client Survey Participant Input Opportunities • For Engagement manual see: www.communitytrials.org Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 18
  19. 19. Thank you to Partners and Funders! Funders: Patient Centered Outcomes Research Institute (PCORI); National Institute of Mental Health (NIMH); National Library of Medicine (NLM); Robert Wood Johnson Foundation; California Community Foundation; UCLA Clinical and Translational Science Institute Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 19
  20. 20. Cognitive Outcomes in Pediatric Localization Related Epilepsy (COPE) PCORI Research Priority: Assessment of Prevention, Diagnosis and Treatment Options David W. Loring, Ph.D. Departments of Neurology and Pediatrics Emory University Brandy Parker My Epilepsy Story PCORI Webinar Promising Practices of Meaningful Engagement in the Conduct of Research September 19, 2013 Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 20
  21. 21. AED Selection – How to Choose?  Stop seizures!  Other factors  Cost  Ease of dosing/administration  Side-effect profile  Cognition and attention  Mood and irritability  Long-term effects on school and employment Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 21
  22. 22. Multiple Stakeholders  Children (and families) with LRE  Physicians and Healthcare Professionals  Epilepsy Advocacy Groups Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 22
  23. 23. Epilepsy Partnership  Epilepsy Foundation  Provide web-based resources for education  Participate in Public Policy Institute with parents and teens given yearly in Spring  www.MyEpilepsyStory.org (Ms. Parker) Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 23
  24. 24. COPE Executive Committee  Clinical Core  David Loring, PhD  Kimford Meador, MD  Patient Stakeholder Representative  Brandy Parker  Clinical Site Representative  Coordinating Center  Avital Cnaan, PhD  Catherine Gillespie, PhD  Medical Monitor  William Gaillard, MD  Consultant  Shlomo Shinnar, MD  Tracy Glauser, MD Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 24
  25. 25. COPE Summary  Will establish if one AED maximally preserves cognition  Will establish behavior side effect risk  Characterizes child’s perspective on multiple measures  Information dissemination on partner websites will empower children and families to guide clinical treatment Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 25
  26. 26. Share your thoughts on engagement in research! Submit your comments and questions on PCORI’s website until September 20 at 5:00 p.m. ET. We will make an effort to answer your questions during the allotted public comment period of the webinar, as well as post the answers online after the event. Join the conversation on Twitter during the meeting using the hashtag #PCORI. Share your comments and questions during the public comment period of the webinar from 1:40 - 2:00 p.m. ET. Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 26
  27. 27. Question and Answer Session Promising Practices of Meaningful Engagement in the Conduct of Research 27
  28. 28. Thank you for joining us! Please complete the brief survey about the webinar. Your feedback is important to us and we look forward to refining our efforts based on your experience. http://bit.ly/1ePKb92 Promising Practices of Meaningful Engagement in the Conduct of Research Twitter: #PCORI 28

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