Abstract
BackgroundGuidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible means of getting repeated feedback from users.MethodsBetween 2017 and 2020, two Swiss centers for primary care (Lausanne and Bern) created citizen advisory groups to contribute to multiple improvement cycles for colorectal, prostate and lung cancer screening DAs. Following Community Based Participatory Research principles, we collaborated with local organizations to recruit citizens aged 50 to 75 without previous cancer diagnoses. We remunerated incidental costs and participant time. One center supplemented in-person meetings by mailed paper questionnaires, while the other supplemented meetings using small-group workshops and analyses of meeting transcripts.ResultsIn Lausanne, we received input from 49 participants for three DAs between 2017 and 2020. For each topic, participants gave feedback on the initial draft and 2 subsequent versions during in-person meetings with ~ 8 participants and one round of mailed questionnaires. In Bern, 10 participants were recruited among standardized patients from the university, all of whom attended in-person meetings every three months between 2017 and 2020. At both sites, numerous changes were made to the content, appearance, language, and tone of DAs and outreach materials. Participants reported high levels of satisfaction with the participative process.ConclusionsCitizen advisory groups are a feasible means of repeatedly incorporating end-user feedback during the creation of multiple DAs. Methodological differences between the two centers underline the need for a flexible model adapted to local needs.
Highlights
Large practice variations between physicians suggest that their preferences often dominate those of patients when making preference-sensitive decisions [1]
We developed a new method of involving people eligible for cancer screening and used this method during the development of four decision aids at two centers for research in primary care
Standardized patients act as patients during teaching sessions and exams
Summary
Large practice variations between physicians suggest that their preferences often dominate those of patients when making preference-sensitive decisions [1]. International guidelines for the creation of DAs specify that their development process should include a needs assessment, review, and testing by clients or patients targeted by the materials [6, 7]. Several established DA developers do extensive user-testing to ensure their DAs fit into routine patient and provider interactions [8]. These approaches are very resource intensive for smaller developers, especially if new users need to be recruited to test each iteration of a DA or DAs addressing multiple health issues in a short period of time. Guidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible means of getting repeated feedback from users
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