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Patient Engagement in Research: ISQua webinar July 2016

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Patients, family, informal caregivers, and healthy individuals are experts in their own lived experience. Around the world, there is increasing focus on embedding this rich perspective throughout the research process – from research governance and priority setting to the design and conduct of research, as well as sharing its results. These slides, from an ISQua webinar provide an overview of this movement, as well as the why and how of such engagement. A series of resources designed to support those who wish to strengthen engagement in research are also included.

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Patient Engagement in Research: ISQua webinar July 2016

  1. 1. 1 #ISQuaEd @jenzelmer
  2. 2. Nothing About Me Without Me Engaging Citizens in Health Research International Society for Quality in Healthcare WebinarJuly 5, 2016
  3. 3. 3 #ISQuaEd @jenzelmer Objectives • Understand the motivations and context for evolving global efforts to strengthen the engagement of patients, family, informal caregivers, and healthy individuals in the health research process. • Describe various ways that these efforts have been operationalized. • Explore promising practices to strengthen engagement in health research. • Identify a series of resources designed to support those who wish to strengthen engagement in research.
  4. 4. 4 #ISQuaEd @jenzelmer Introductions: Who’s Here? Polling Question #1 (choose all that apply to you) • Patient/client/service user and/or informal carer • Researcher • Health professional • Health sector manager, policy-maker, or research funder • Other
  5. 5. 5 #ISQuaEd @jenzelmer What is citizen/patient engagement in research? • “Patient engagement occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge” - CIHR • “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” - PCORI
  6. 6. 6 #ISQuaEd @jenzelmer Passive • Person is a data point/ subject • 'doing to' Active • Person contributes/ co-creates • ‘doing with’
  7. 7. 7 #ISQuaEd @jenzelmer What citizen/patient engagement is not • Analyzing data from health records or a survey completed by citizens – i.e. citizens/patients only as subjects of research • Having someone on a committee so you can check a box – Don’t ask unless you’re prepared to listen • Turning patients into researchers (necessarily)
  8. 8. 8 #ISQuaEd @jenzelmer
  9. 9. 9 #ISQuaEd @jenzelmer Why people choose to get involved in research Personal benefit Altruistic reasons • “In practice most people we talked to were motivated by a mixture of reasons which might change over time” – healthtalk.org
  10. 10. 10 #ISQuaEd @jenzelmer Why involve citizens/patients in research? Hypothesized impacts of engagement Source: Esmail L, Moore E, Rein A. (2015). Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice. J. Comp. Eff. Res., 4(2), 133-45.
  11. 11. 11 #ISQuaEd @jenzelmer Goals of Community Engagement (Tindana, et al.) • To ensure the relevance of research • To assess whether relevant research is culturally and practically acceptable in the context it is intended • To ensure that community disruption is minimized, i.e., avoiding the displacement of local medical staff from pressing local needs • To avoid exploitation, by ensuring a fair distribution of the benefits of research • To take into account the ethical hazards that may be part of the social, economic, and political landscape of the community Tindana PO, et al. (2007). Grand Challenges in Global Health: Community Engagement in Research in Developing Countries. PLOS Medicine, 4(9): e273. LINK
  12. 12. 12 #ISQuaEd @jenzelmer Which Goal is most important for you? Polling Question #2 • Better quality, more relevant research • Empower patients • Increase acceptability and uptake, avoid exploitation • Avoid exploitation and minimize community disruption • Democratic ideals (e.g. accountability, transparency)
  13. 13. 13 #ISQuaEd @jenzelmer Opportunities for Engagement in Research Source: Domecq JP. (2014). Patient Engagement in Research: A Systematic Review. BMC Health Services Research, 14:89. LINK
  14. 14. 14 #ISQuaEd @jenzelmer Who to Involve and How? Source: Abelson J. et al. 2015. A framework for patient and public involvement in Ontario’s health technology assessment process. Draft manuscript. Cited in Patient Engagement and Canada’s SPOR Initiative A Resource Guide for Research Teams and Networks
  15. 15. 15 #ISQuaEd @jenzelmer Identifying Participants: Considerations • Approach should reflect intended goals – Alignment with research plan • Can influence nature of engagement and outcomes – “We found no comparative analytic studies to provide evidence supporting a particular method to identify or select patients for engagement in research.” – Domecq et al. • Expectations for all parties need to be clear – Successful relationship takes effort and resources – Shared language and understanding
  16. 16. 16 #ISQuaEd @jenzelmer Identifying Participants: Examples of Options • e.g. direct approach, advertised, social media, snowball Convenience sample • e.g. some citizen juries or panels Random(ish) selection • Usually based on pre-identified criteria Purposive recruitment • "communities of inquiry and action evolve and address questions and issues that are significant for those who participate as co-researchers” (Reason and Bradbury) Participatory action research
  17. 17. 17 #ISQuaEd @jenzelmer How to Involve? Many Different Approaches Surveys Focus groups Interviews Deliberation Organizational participation Participatory action research Open innovation Structured review etc.
  18. 18. 18 #ISQuaEd @jenzelmer Frequency of Reports of Use of Various Engagement Methods: Domecq Source: Domecq JP. (2014). Patient Engagement in Research: A Systematic Review. BMC Health Services Research, 14:89. LINK
  19. 19. 19 #ISQuaEd @jenzelmer Addressing Risks, Barriers & Opportunities “Of the few studies that described potential solutions [to risks and barriers], the most commonly described were spending adequate time to build reciprocal relationships (between patients and researcher), fostering mutual respect and developing clear expectations that are explicitly described and documented in study protocols.” – Domecq et al.
  20. 20. 20 #ISQuaEd @jenzelmer Considerations in Involvement in Research (1) LANGUAGEa EXPECTATIONSj RISK OF TOKENISMx WHO’S ON FIRST?j DIVERSITYX BIAS t COMMUNITIES & INDIVIDUALS5 HISTORICAL CONTEXTy
  21. 21. 21 #ISQuaEd @jenzelmer Considerations in Involvement in Research (2) RESOURCES w LOGISTICS! TRAINING Y VALUING CONTRIBUTION- MUTUAL RESPECTN CAPTURE ^ SUSTAINING INTERESTp INNOVATIVE APPROACHESP
  22. 22. 22 #ISQuaEd @jenzelmer Starting Points: Selected Resources • About patient engagement in research – Why, effectiveness, outcomes • Experiences of patient engagement in research – Case studies, personal experiences • Tools and guides to facilitate patient engagement in research What resources have you found useful? Who do you follow? Please type suggestions in the chat box or tweet with hashtag #ISQuaEd
  23. 23. 23 #ISQuaEd @jenzelmer Starting Points: Selected Resources About Patient Engagement in Research • Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations. [Online] 2012; 17:637-650. LINK • Domecq JP. (2014). Patient Engagement in Research: A Systematic Review. BMC Health Services Research, 14:89. LINK • Esmail L, Moore E, Rein A. (2015). Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice. J. Comp. Eff. Res., 4(2), 133-45. • Staley K. (2015). ‘Is It Worth Doing?’ Measuring the Impact of Patient and Public Involvement in Research. Research Involvement and Engagement, 1(6). LINK • Tindana PO, Singh JA, Tracy CS, Upshur REG, Daar AS, et al. (2007) Grand Challenges in Global Health: Community Engagement in Research in Developing Countries. PLoS Med 4(9): e273. doi: 10.1371/journal.pmed.0040273 LINK
  24. 24. 24 #ISQuaEd @jenzelmer Starting Points: Selected Resources Case Studies and Experiences • Cochrane Consumer Network: LINK • Global health case studies: Tindana PO, Singh JA, Tracy CS, Upshur REG, Daar AS, et al. (2007) Grand Challenges in Global Health: Community Engagement in Research in Developing Countries. PLoS Med 4(9): e273. doi: 10.1371/journal.pmed.0040273 LINK • PACER (Canada): a cadre of patient researchers who have undertaken a year-long internship in engagement research LINK • UK: Citizen and researchers experiences with research engagement LINK
  25. 25. 25 #ISQuaEd @jenzelmer Starting Points: Selected Resources Guides and Tools • Cochrane training for consumers: LINK • INVOLVE briefing notes for researchers: LINK • PCORI Engagement Rubric: LINK • Research Involvement and Engagement Journal LINK • SPOR (Canada) resource guide for research teams and networks undertaking patient engagement in Canada by Julia Abelson: LINK • TOPPER Toolkit with orientation materials: LINK
  26. 26. 26 #ISQuaEd @jenzelmer @jenzelmer ThankYou

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