Open AccessEvaluation of a project to engage patients in the development of a patient‐reported measure for HIV care (the I‐Score Study)
Author(s) -
Lessard David,
Engler Kim,
Toupin Isabelle,
Routy JeanPierre,
Lebouché Bertrand
Publication year - 2019
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12845
Subject(s) - thematic analysis , focus group , confidentiality , perspective (graphical) , data collection , medicine , descriptive statistics , family medicine , human immunodeficiency virus (hiv) , psychology , qualitative property , medical education , qualitative research , sociology , artificial intelligence , anthropology , law , social science , statistics , mathematics , political science , computer science , machine learning
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 .