Citizen advisory groups for the creation and improvement of decision aids: experience from two Swiss centers for primary care

Abstract

Plain English summary 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.

Keywords

• Decision aids
• Participatory research
• Citizen involvement