Patient-Oriented Summer Insitutes_5.4.16_SR_Bao Chau Tran

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The Operationalization of Patient Engagement in Research: A Scoping Review

Bao Chau Tran*, Ju Young Yoo, Clayon HamiltonPhD Candidate, Rehabilitation Science, UBC

PhD Trainee, Arthritis Research Canada

Patient-Oriented Research Summer Institute 20165/4/2016

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Overview• Introduction•Method•Results•Conclusion

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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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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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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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Eligibility Criteria

•Inclusion Criteria

•English•Primary or secondary analysis•Involve patients above and beyond being a participant in research

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Data SelectionRecords after duplicates

removed (n = 18,983)

Full-text articles assessed for eligibility

(n = 329 )

Studies included in qualitative synthesis

(n = 36 )

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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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Study Location

Study Location (Country) Number (N) Percent (100%)

United Kingdom 10 27.78Canada 7 19.44USA 9 25The Netherlands 4 11.11Australia 3 8.33Norway 1 2.78Germany 1 2.78New Zealand 1 2.78

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Methods and Types of Engagement

Qualitative Quantitative Mixed-Methods0

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Consultation Collaboration Patient-led

No. Studies

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Themes

Patient-Researcher Relationship Degree of Involvement

Benefits of Involvement Challenges of Involvement

Patient Inclusivity

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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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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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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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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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Themes

Patient-Researcher Relationship Degree of Involvement

Benefits of Involvement Challenges of Involvement

Patient Inclusivity

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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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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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Themes

Patient-Researcher Relationship Degree of Involvement

Benefits of Involvement Challenges of Involvement

Patient Inclusivity

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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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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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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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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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Thank you! Any Questions?

Contact Information:btran@arthritisresearch.ca