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Nothing About Me Without Me
Engaging Citizens in Health Research
International Society for Quality in Healthcare Webinar July 5, 2016
3 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.
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Introductions: Who’s Here?
Polling Question #1 (choose all that apply to you)
• Patient/client/service user
• Informal carer or advocate
• Researcher
• Research funder
• Health professional
• Manager or policy-maker in the health sector
• Other
5 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
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Passive
• Person is a data point/
subject
• 'doing to'
Active
• Person
contributes/
co-creates
• ‘doing with’
7 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)
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9 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
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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 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
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Which Goal is most important for you?
Polling Question #2
• Better quality research
• More applicable/relevant
• Empowering patients
• Increased acceptability and uptake
• Democratic ideals
• Moral obligation
• Minimize community disruption
• Avoid exploitation
13 Opportunities for Engagement in Research
14 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 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 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 How to Involve? Many Different Approaches
Surveys
Focus groups
Interviews Deliberation Organizational
participation Participatory
action research
Open innovation
Structured review
etc.
18 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 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 Considerations in Involvement in Research (1)
LANGUAGE
a
EXPECTATIONS
j
RISK OF TOKENISM
x
WHO’S ON FIRST?
j
DIVERSITY
X
t
BIASCOMMUNITIES
& INDIVIDUALS
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HISTORICAL CONTEXT
y
21 Considerations in Involvement in Research (2)
RESOURCES
w
LOGISTICS
!
TRAINING
Y
VALUING CONTRIBUTION
-
MUTUAL RESPECT
N
CAPTURE
^
SUSTAINING INTEREST
p
INNOVATIVE APPROACHES
P
22 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 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 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 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
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