RESUMO
BACKGROUND: 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. METHODS: Between 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. RESULTS: In 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. CONCLUSIONS: Citizen 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.
Decision aids are paper or electronic tools that help people make medical decisions. They have been shown to help with shared decision making between patients, their loved ones, and a health professional. When we create decision aids, we try to involve patients at each step, traditionally using focus groups. However, new approaches are needed because focus groups take a lot of time and money.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. Two of the decision aids were for colorectal cancer screening (one in French, one in German), and one each for prostate and lung cancer screening. We recruited people aged 50 to 75 interested in improving health information materials from community organizations and among standardized patients from local medical schools to form citizen advisory groups. Standardized patients act as patients during teaching sessions and exams. Some people took part in face-to-face meetings to give us feedback on the materials, while others responded to questionnaires and gave feedback by mail. The same participants gave feedback multiple times as we made improvements to the decision aids.The citizen advisory groups provided us with repeated, meaningful input during the development of decision aids. We think they allowed us to create better, more patient-centered decision aids, while using fewer resources than traditional focus groups. Other researchers who develop decision aids may want to use a similar approach.
