This document summarizes a scoping review examining how patient engagement in research has been operationalized. The review identified 36 studies that involved patients beyond being participants. Most studies were from the UK, Canada, or US and used qualitative, quantitative, or mixed methods. Key themes identified included the patient-researcher relationship, degree of involvement, benefits of involvement, challenges of involvement, and patient inclusivity. The relationship theme explored trust, status, and power relations. Challenges included potential harms versus benefits and issues of representation. Researchers employed strategies like CBPR to enhance patient feedback and engagement.

1. The Operationalization of Patient Engagement
in Research: A Scoping Review
Bao Chau Tran*, Ju Young Yoo, Clayon Hamilton
PhD Candidate, Rehabilitation Science, UBC
PhD Trainee, Arthritis Research Canada
Patient-Oriented Research Summer Institute 2016
5/4/2016
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2. Overview
•Introduction
•Method
•Results
•Conclusion
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3. Patient Engagement in Research (PER)
• Patients as partners within the research team
• Involved in all phases of research
• Patient engagement could occur at different stages of the research
process
• Assisted researchers to think about the relevance of research
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4. Operationalization of PER
• Limited synthesis of the operationalization of patient engagement in
research.
• Objective: To understand how patient engagement in research are being
operationalized in health research.
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5. Methods
• Arksey and O’Malley (2005) approach
• A comprehensive review of six databases
• EMBASE
• PsycInfo
• Sociological Abstracts
• MEDLINE via Ovid
• CINAHL
• Conference Papers Index
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6. Eligibility Criteria
•Inclusion Criteria
•English
•Primary or secondary analysis
•Involve patients above and beyond being a
participant in research
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7. Data Selection
Records after duplicates
removed
(n = 18,983)
Full-text articles assessed
for eligibility
(n = 329 )
Studies included in
qualitative synthesis
(n = 36 ) 7

8. Data Extraction and Data Analysis
• We extracted the following information:
• Title, author(s), year, journal, aim of study, and study location
• Patient-partners’ population
• Patient-partners’ involvement
• Outcomes/results from patient-partners’ involvement
• Data Analysis
• Conventional Content Analysis
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9. Study Location
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Study Location (Country) Number (N) Percent (100%)
United Kingdom 10 27.78
Canada 7 19.44
USA 9 25
The Netherlands 4 11.11
Australia 3 8.33
Norway 1 2.78
Germany 1 2.78
New Zealand 1 2.78

10. Methods and Types of Engagement
10
0
2
4
6
8
10
12
Qualitative Quantitative Mixed-Methods
Consultation Collaboration Patient-led
No. Studies

11. Themes
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Patient-Researcher
Relationship
Degree of
Involvement
Benefits of
Involvement
Challenges of
Involvement
Patient Inclusivity

12. Patient-Researcher Relationship
• Definition: The patient-researcher dynamic working relationship geared
towards a productive research processes and outcomes.
- Building Trust and Respect
- Existing status
- Power Relations
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13. Patient-Researcher Relationship
• Building Trust and Respect
• “Anticipating that older Chinese Americans have high respect for and
expectations from academic institutions and scholars, the researchers
diligently maintained a high standard of work ethic by following
through with commitments, such as being on time for scheduled
appointments, being organized, and using time efficiently.
Researchers actively listened to them, showing interest in their life
stories, acknowledging their expertise, and accepting their suggestions
and comments.” (Wang-Letzkus et al. (2012))).
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14. Patient-Researcher Relationship
• Existing Status
• “ The fact that the researcher leading the group (Author 1) had
herself recently had a baby in neonatal care perhaps contributed
to a more equal relationship, particularly given that she discussed
within the research meetings the emotional distress this had
caused and the feelings of vulnerability she had experienced as a
patient.” (Foster V & Young A. (2015)).
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15. Patient-Researcher Relationship
• Power Relations
• “ We encouraged the parents in the research group to think critically
about the issue of employing routinely collected health data for research
purposes. While it was not our intention to sway participants’ opinions on
the subject … Participants found the research worthwhile, although they
were mindful of how much control they had over the process … They
were not involved in the initial design of the question … nor were they
involved in the process of ethical review.” (Foster V & Young A. (2015)).
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16. Themes
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Patient-Researcher
Relationship
Degree of
Involvement
Benefits of
Involvement
Challenges of
Involvement
Patient Inclusivity

17. Patient Inclusivity
Definition: Patient Inclusivity is defined as the strategies or approaches
that researchers employed to enhance patients’ inclusion in research.
• Researchers utilized strategies or approaches (e.g. CBPR) to include
patients in research.
• Enhanced patients’ feedback and engagement in research.
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18. Patient Inclusivity
• “Researchers were aware of the barriers such as distrust … CBPR
strategies were used to establish a culturally sensitive and caring
partnership … they were willing to spend time with community
members to understand their problems and concerns.” (Wang-Letzkus
et al. (2012)).
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19. Themes
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Patient-Researcher
Relationship
Degree of
Involvement
Benefits of
Involvement
Challenges of
Involvement
Patient Inclusivity

20. Challenges of Involvement
Definition: Challenges of Involvement is characterized as the barriers
that exists amongst patients within the research teams that hinders
patient engagement in research.
• Identified Further Work;
- Patients’ exclusion in certain research processes
- Balance between the potential harm versus benefits
- Issues of representation
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21. Challenges of Involvement
•“Most co-researchers described the research
experience as “painful” in the sense of delving
into the past re-visiting abusive incidents in their
mind.” (Carlin R (1998)).
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22. Conclusion
• Researchers have conducted patient engagement in research through
building trust and respect, existing status, and power relations, which
established the patient-researcher relationship.
• Further work to explore the power relations between patients and
researchers within the research team.
• Further work to understand the challenges of involving patient in
research.
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23. Acknowledgement
• Jenny Leese, PhD Candidate, University of British Columbia
• Ju Young Yoo, MSc, Research Assistant, Arthritis Research Canada
• Clayon Hamilton, PhD, University of British Columbia
• Linda Li, PhD, University of British Columbia
• Ms. Charlotte Beck, UBC librarian, University of British Columbia
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24. Thank you! Any Questions?
Contact Information:
btran@arthritisresearch.ca
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