Dunja Dreesens

179 WP4 The consensus meetings For the first meeting, 28 out of 43 invited experts were present. When asked to mark the most important sections of the guidance, experts prioritised the following issues: chose the right type of knowledge tool for the aim it pursues; use the guideline (recommendation) itself as the most important source of information for the knowledge tool; determine who will become the owner of the knowledge tool; make the knowledge tool easily accessible and free to use; organize authorization by the healthcare professional organization(s) as well as the patients’ organization(s). For the second meeting 21 out of 29 invited were present. All stakeholders were well represented. In general, they expressed a positive attitude towards the guidance although two critical remarks were made. Firstly, multiple stakeholders emphasized to widen the scope of the guidance so that patient-directed knowledge tools can also be developed on topics that are not covered by clinical practice guidelines; especially patient organizations claimed that the information needs of patients should determine the content of patient-directed knowledge tools, as opposed to only following the existing guideline recommendations. Secondly, the nursing organisation criticized the language of the guidance being too scientific and loaded with too much medical jargon. The third meeting was attended by formal representatives of all parties except for the Dutch Association of Insurers, which formally declined while giving blind consent to the guidance as a token of trust in the representatives of the patients and providers. Therefore, the final meeting was attended by four participants, representing the Dutch Federation of Patients’ Organisations (HP), the Dutch College of General Practitioners (TD), the Dutch Association of Medical Specialists (IM), and the Dutch Nurses’ Association (SK). They expressed their positive intentions with regard to supporting the guidance, but only after the following issues were clarified: the minimum criteria should clearly be listed separate from the additional suggestions; developers of patient-directed knowledge tools should be encouraged to use the guidance according to the comply or explain principle; authorization of patient-related knowledge tools should be done on a process level and not on the level of authorizing the content of the tools, as content was already authorized in the final phase of the guideline development process. In retrospect, it can be observed that the quest for clear and outspoken procedural standards that was verbalised by some project leaders in WP3 was strongly echoed in the first meeting but that it faded away in the second meeting, while only crude instructions for each step were regarded sufficient in the third and final meeting. The guidance WP1 provided rich data for formulating eight distinct development steps in the guidance (Table 2). The final guidance consists of three components: a) recommendations for which type of knowledge tool (such as a lay summary or decision aid) best fits the objectives of the development group; b) minimum criteria for the eight development steps, content and governance of each tool (Box 2); c) supplemental, detailed and concrete suggestions for each step in a second layer of information (14 pages in total, not presented, available on request). Developers deviating from these minimum criteria would have to provide a rationale for why a criterion does not apply (‘comply or explain’). The steps need not always be followed in linear fashion, as the guidance establishes the criteria for an effective development process rather Valorisation chapter