Dunja Dreesens

178 Results How did we arrive at the guidance? WP1 Inventory of existing methods and criteria in scientific and grey literature We found 51 hits in PubMed, of which four studies were included that describe criteria for developing patient versions of guidelines. The grey literature revealed many websites publishing patient versions of guidelines, but information on how these knowledge tools were developed was scarce. Detailed descriptions were found, however, in the Guidelines International Network ‘GIN Public toolkit on patient and public involvement in guidelines’. For developing patient decision aids, we found 385 hits in PubMed, of which 24 studies were included; 10 more relevant publications were added by the experts in the project group. In addition, the websites revealed rich data on what exactly patient decision aids are and how they should be developed. The criteria for the content of patient decision aids were mostly based on empirical data 26 , while such data were more or less absent for the content of patient versions of guidelines. IPDAS criteria (ipdas.ohri.ca) enjoy broad support where criteria for the content of decision aids are concerned, due to their substantiation by means of systematic consensus methodology. WP3 Feasibility assessment in ongoing development projects While reactions to the ordering of the development steps in the draft guidance were unanimously positive, the project leaders were extremely divided as to the degree of detail when it came to the instructions within the steps of the guidance, such as how best to map the patient perspective in the scoping and needs assessment phase. Whereas some project leaders expressed a clear desire for procedural standards ( it should be clear at all times who does what and when ), others felt that it would be sufficient for the instructions in each step to provide only general direction. Concerning the other issues raised, we report those most frequently mentioned: - Deviating from the linear ordering of the guidance should be possible. For example, the guideline working group may be no longer active, while the patient-directed tool is urgently needed. - Language and jargon used in the guidance was often found to be too academic. - The amount and complexity of the work to map the patients’ perspective in the scoping and needs assessment phase, e.g. by organising a focus group or a questionnaire survey, was often underestimated. Due to limitations in resources and the high workload, work should not be done twice, in the guideline working group and in the patient tool development group. Moreover, the required minimum number of two patients in the team - as was prescribed in the earlier drafts - was a concern, as well as the mandatory inclusion of a representative of the guideline working group. - Formal authorisation of the tool was not regarded necessary by all stakeholders, with the argument that the guideline was already approved. - All project leaders plead for a central portal to host the patient directed knowledge tools, supported by a national party taking care of the governance of the tools. Valorisation chapter