Dunja Dreesens

177 Summary of guideline: Concise overview of the guideline, providing main conclusions and recommendations in clear and simple language; can be applied in practice independently from the guideline; intended for both care providers and patients. Patient decision aid (PDA): Auxiliary information and answers to frequently asked questions for patients when choosing, with their care providers, from different options – including the option to forgo care – in a specific area such as diagnostics, treatment, screening, counselling or aftercare; discusses the possible outcomes and effects of each option – desirable or otherwise – and their likelihood of occurring; helps patients to weigh up their options based on their own values, standards and personal circumstances. Work package 3 The first and second draft guidance was presented for a critical assessment of its feasibility to the project leaders of nine working groups tasked with the development of patient versions of guidelines or patient decision aids along clinical practice guidelines. These working groups were at that time in various phases of their development projects. Five projects focused on developing patient information based on guidelines, e.g. for patients with inflammatory bowel disease. Four projects focused on developing patient decision aids for specific recommendations, e.g. in the care for orthopaedic patients. For the third draft of the guidance we did not only seek for critical assessment by the project leader, but we also asked the project leader to actually apply (part of) the guidance steps in their working groups and to report about their experiences. Four of these nine ongoing projects were further analysed by means of outreach visits and participatory observations of working group meetings. Finally, the last draft and the experiences were fed back to each project leader in individual semi-structured qualitative interviews. The interviews were audiotaped, transcribed and analysed with thematic content analysis 26 . Work package 4 The draft versions of the guidance were discussed in three invitational meetings. We purposefully sampled the participants for the first two meetings to guarantee continuity in the process by inviting a core group for both meetings. While we planned the input from academic experts in the first meeting, the profile of participants gradually shifted to stakeholders representing end-users only in the last meeting. First, a two-hour expert meeting was held in March 2016 aimed at collecting the experts’ suggestions, for which 43 stakeholders representing patients, care providers, researchers, web and tool designers and healthcare insurers were invited. Second, a two-hour meeting was held in June 2016, for which 29 stakeholders representing patients, care providers, knowledge institutions, healthcare insurers and the government were invited to question their support to the draft version of the guidance. Third and finally, a 90-minute consensus meeting was held in September 2016, for which only the formal representatives of patients, healthcare providers and healthcare insurers were invited in order to gain formal support. Valorisation chapter