ArticleHealth expectations : an international journal of public participation in health care and health policy2019
Evaluation of a project to engage patients in the development of a patient-reported measure for HIV care (the I-Score Study).
Article in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04702412 (Implementation of an Electronic Patient-reported Measure of Barriers to Antiretroviral Therapy Adherence With the Opal Patient Portal), which is not on this map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Implementation of an Electronic Patient-reported Measure of Barriers to Antiretroviral Therapy Adherence With the Opal Patient Portal: a Mixed Method Type 3 Hybrid Pilot Study at a Large Montreal HIV Clinic
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient and public involvement in HIV research: a mapping review and development of an online evidence map.Journal of the International AIDS Society · 2024Pooled it
- Article
- Article
- Article
- Recognizing patient partner contributions to health research: a systematic review of reported practices.Research involvement and engagement · 2023Review
- Content validation of a new measure of patient-reported barriers to antiretroviral therapy adherence, the I-Score: results from a Delphi study.Journal of patient-reported outcomes · 2022Article
- Article
- Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts.Journal of patient experience · 2020Article
- Feasibility of Four Interventions to Improve Treatment Adherence in Migrants Living with HIV in The Netherlands.Diagnostics (Basel, Switzerland) · 2020Article
- Evaluation of a project to engage patients in the development of a patient-reported measure for HIV care (the I-Score Study).Health expectations : an international journal of public participation in health care and health policy · 2019Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundPatient 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.
objectiveTo 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
participantsA 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.
methodsThe 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.
resultsPE 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.
conclusionThis PE Project evaluation highlighted growing engagement levels, high satisfaction rates and the importance of a patient-centric approach to PE.
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