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Project title and authorsSHCS project number (if applicable)Project aimWhat kind of research project was/is it?For which phase(s) of the project was PPI implemented? Click here for examplesReport the aim of PPI in the studyProvide a clear description of how PPI was implemented in the study (how many PPI members, what was their background/expertise, how many meetings/hours were needed from their side, etc.)Add references and links to the project and/or further explanation of how PPI was implemented in the studyOptional: What kind of PPI model did you use? Click here for an explanationOptional: How much budget was invested in PPI?Optional: What benefits/challenges did you experience using PPI in your study?Contact person and email
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Who wants to switch to injectables? Patients’ preferences and values about modern antiretroviral treatments in the Swiss HIV Cohort Study
#899
Explore preferences and values on ART characteristics as well as associated burden of treatment of SHCS participants and to evaluate their knowledge and acceptance of iLA-ART.
surveyPlanning/preparation & Closure/Post-Closure
As patients can best determine which health outcomes are relevant to them, it was for us obvious that these were already involved in the study design and the creation of the used questionnaires. This specific study would fully lose its pertinence without PPI.
In this project, our research team included expert patients. Two of them have already been consulted as SB members before definitively defining research questions, and have been involved in the conception of the research proposal. The questionnaire used in the study were revised and edited by them and three additional members of the CHUV HIV Community Council were consulted to increase diversity of patient input. The expert patients who are part of the research team were involved in the discussions regarding the budget allocated for PPI, are informed about relevant changes in study parameters, and contributed to writing-up the presented results at EACS 2023. Further, they will be involved in further dissemination of results (manuscript). Investigators are in direct contact with the expert patients, ensuring a flat and simplified communication and enabling them to easily share their opinion and manifest any concerns if necessary.
1) Study protocol SHCS #899, 2) EACS 2023 Abstract #516: https://onlinelibrary.wiley.com/doi/10.1111/hiv.13572
Model A
As previously stated, this project would lose its pertinence without PPI because persons living with a condition are the ones who best know what matters to them. As this project focusses on patients preferences and values, PPI was the right and only catalysor to set this study.
Yonas Martin (yonas.martin@insel.ch)
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