Evidence Library

Title: Evaluation of a project to engage patients in the development of a patient-reported measure for HIV care (the I-Score Study).
Author: Lessard D, Engler K, Toupin I, I-Score Consulting Team, Routy JP, Lebouché B.
Date Published: 2018
Reference: Health Expectations 2018 doi: 10.1111/hex.12845. Epub ahead of print
Are service users or carers authors: Yes

Abstract: Aim: To evaluate the first phase (22 months) of involvement in the I-Score Study, which is developing a patient-reported measure of barriers to sticking with HIV treatment. Methods: A Montreal-based committee of ten people with HIV was set up to advise the study. Their involvement was evaluated by observing meetings of the committee, analysing minutes, and carrying out two focus groups and a survey. Results: The authors describe how initially the meetings were mostly about information sharing and consultation, but later evolved to include greater collaboration. The patients involved rated their involvement highly. They suggested that important factors for success included, positive interactions, co-learning, making joint decisions about the involvement, and collectively managing issues of confidentiality.

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Categories: health
impact on service users involved
impact of public involvement
journal article

Date Entered: 2018/11/26

Date Edited: 2018/11/26

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