Dunja Dreesens

181 Box 2: The guidance. A brief description of each step for the development of patient information on a guideline or a patient decision aid (PDA) connected to specific guideline recommendation(s). 1 TEAM The team composition is discussed with the relevant patients’ and professional associations. The team has an independent chair and a process support member/secretary, along with at least one patient (-representative) with first-hand experience (acquired by the patients’ organisation). Membership of the team is approved based on written Declarations of Interests. An editor with experience in writing copy for a non-expert audience will be involved in the team. If the development of the tool is part of a guideline project, the team will (ideally) be commissioned by the guideline working group itself, which has budgeted the developmental work. 2 SCOPE The team checks the availability of existing tools, and establishes the objective, the target group and the rough form of the tool. Patient information: Determine where the guideline is failing to meet patients’ information needs. After all, guidelines for practice are typically drawn up from the perspective of the care provider. Whenever possible, address the major underlying questions patients have about the guideline, as well as the key recommendations. PDA: Select one or more recommendations from the guideline that have to do with the decision at hand, and that are preference- sensitive in nature. 3 NEEDS There are multiple ways to identify the needs of patients: a review of the literature, and/or additional qualitative or quantitative methodologies for collecting data, such as focus groups or questionnaires. Patient information: Concerns any additional needs that have not yet been elaborated during the guideline development, e.g. with regard to multimorbidity, ethnic minorities, alternative interventions, self- management. PDA: Involves questions the patients and their proxies may have when faced with taking a specific decision. Which needs, preferences and attributes influence a given patient’s decision-making? This might involve information needs and psychosocial needs, along with important strategies for self-management in connection with the illness or condition, and should also include the variations between patients. Valorisation chapter