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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2. Nothing About Me Without Me
Engaging Citizens in Health Research
International Society for Quality in Healthcare WebinarJuly 5, 2016

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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 and/or informal carer
• Researcher
• Health professional
• Health sector manager, policy-maker, or research funder
• Other

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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’

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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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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.

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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, more relevant research
• Empower patients
• Increase acceptability and uptake, avoid exploitation
• Avoid exploitation and minimize community disruption
• Democratic ideals (e.g. accountability, transparency)

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Opportunities for Engagement in Research
Source: Domecq JP. (2014). Patient Engagement in Research: A Systematic Review. BMC
Health Services Research, 14:89. LINK

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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

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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

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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

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How to Involve? Many Different Approaches
Surveys
Focus groups
Interviews Deliberation
Organizational
participation
Participatory
action
research
Open
innovation
Structured
review
etc.

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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

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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.

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Considerations in Involvement in Research (1)
LANGUAGEa
EXPECTATIONSj
RISK OF
TOKENISMx
WHO’S ON
FIRST?j
DIVERSITYX
BIAS
t
COMMUNITIES
& INDIVIDUALS5
HISTORICAL
CONTEXTy

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Considerations in Involvement in Research (2)
RESOURCES
w
LOGISTICS!
TRAINING
Y
VALUING
CONTRIBUTION-
MUTUAL
RESPECTN
CAPTURE
^
SUSTAINING
INTERESTp
INNOVATIVE
APPROACHESP

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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

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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

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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

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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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@jenzelmer
ThankYou