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- Title
Evaluation of a project to engage patients in the development of a patient‐reported measure for HIV care (the I‐Score Study).
- Authors
Lessard, David; Engler, Kim; Toupin, Isabelle; Routy, Jean‐Pierre; Lebouché, Bertrand
- Abstract
Background: Patient engagement (PE), patients' meaningful involvement in research through partnerships and sensitivity to their expertise, is receiving attention. However, PE initiatives are poorly reported and little is known about patients' perspective on PE. Objective: To document and evaluate the first phase (22 months) of a PE Project for the I‐Score Study which is developing a patient‐reported measure of HIV treatment adherence barriers, we describe the nature of PE conducted, determine the level of PE achieved and present its impacts from the engaged patients' perspective. Setting and participants: A Montreal‐based committee of ten people with HIV was recruited from community and clinical settings and participated in: I‐Score study decision making, knowledge dissemination, research on the experience of people with HIV and the PE project's evaluation. Methods: The evaluation followed a convergent parallel mixed‐methods design. Data collection included participant observation, a satisfaction survey and meeting minutes/transcriptions. Analysis entailed reporting PE activities, generating descriptive statistics and thematically analysing qualitative material. Results: PE consisted of twelve meetings, including two focus groups (needs assessment), in addition to four knowledge dissemination activities. PE levels showed an increase: the first four regular meetings entailed information/consultation, while subsequent meetings reached implication/collaboration. Regarding impacts, patients indicated high and stable satisfaction rates (M = 4.4/5; SD = 0.76). Furthermore, thematic analysis identified "positive interactions," "co‐learning," "self‐determination," and "the collective management of confidentiality" as important PE impacts for engaged patients. Conclusion: This PE Project evaluation highlighted growing engagement levels, high satisfaction rates and the importance of a patient‐centric approach to PE.
- Subjects
CANADA; HIV prevention; FOCUS groups; HEALTH services accessibility; HIV infections; INTERPROFESSIONAL relations; RESEARCH methodology; HEALTH outcome assessment; RESEARCH evaluation; RESEARCH funding; SCALE analysis (Psychology); PATIENT participation; DECISION making in clinical medicine; QUALITATIVE research; QUANTITATIVE research; THEMATIC analysis; HUMAN services programs; HEALTH literacy; EVALUATION of human services programs; DESCRIPTIVE statistics
- Publication
Health Expectations, 2019, Vol 22, Issue 2, p209
- ISSN
1369-6513
- Publication type
Article
- DOI
10.1111/hex.12845