Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience

Original research
by
Pauly, Bernadette et al

Release Date

2022

Geography

Canada

Language of Resource

English

Full Text Available

Yes

Open Access / OK to Reproduce

Yes

Peer Reviewed

Yes

Objective

As part of a community based patient oriented research project, we critically analyze the Strategy for Patient-Oriented Research (SPOR) framework to provide insights into what constitutes safer research with people who use(d) substances.

Findings/Key points

While the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings.

Design/methods

Review of community-based research principles and the SPOR framework, followed by focus groups

Keywords

Peer/PWLLE program involvement