Lenart, Andras (2017). Patient engagement in the development of HIV-specific health instruments: a systematic mixed studies review using Thematic Analysis. McGill Family Medicine Studies Online, 12: e03.

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Abstract

Background: Since the initial spread of HIV infection in the 1980s and the subsequent epidemic, people living with HIV have sought involvement in and helped define the fight against HIV/AIDS. This grassroots HIV activism markedly contributed to the development of patient engagement research methods. Involving patients in research through patient engagement may offer a diverse range of benefits, and is actively supported by funding agencies and governmental bodies. However, there have been few rigorous investigations of the conduct of patient engagement. It is unclear how patient engagement is carried out and described in published HIV health research.

Objectives: To synthesize current evidence about the role and results of patient engagement in the development of HIV health measures as reported in the scientific literature.

Methods: This is a mixed studies systematic review that covers scholarly publications from 1993 to 2015. Search for literature describing HIV-specific instrument development was conducted in the following databases: Pubmed, Medline, PsychINFO, Health and Psychosocial Instruments, and Embase. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Then, thematic analysis was performed to meaningfully synthesize knowledge generated about the topic under investigation.

Results: Our queries generated 4363 records; after screening and verifying eligibility, 39 records were retained for analysis. The quality appraisal highlights poor reporting of engagement methodology. Thematic analysis results suggest that patient engagement contributes to the development process as researchers report gaining insight into patient concerns. In some instances, the approach is considered essential and recognized as a collaborative approach, involving partnerships with patients. In other instances, patient engagement is considered challenging as the complexity of the research process increases.

Discussion: Our review provides support for many of the benefits as well as some of the challenges of patient engagement espoused in the literature. Additionally, the reporting of patient engagement in the development of HIV-health measures appears limited, suggesting that the adoption of reporting guidelines should be encouraged. We are in agreement with others who have argued for standardized methods of engagement reporting and offer some suggestions.