Dunja Dreesens

173 Introduction The knowledge in health care is expanding daily – so that keeping up with knowledge is a challenge 1 . The development of knowledge tools is intended to support clinicians to keep pace and to improve their decision-making. Many knowledge tools such as clinical practice guidelines, protocols, or clinical pathways have been developed over the years 2 . With the increasing call for a patient revolution 3 , further tool types have been added to the mix, including patient decision aids. A key source of information for patient-directed knowledge tools is clinical practice guidelines. Clinical practice guidelines summarize research evidence systematically and provide recommendations on a specific clinical topic 4 . Nowadays, the GRADE approach is used as a framework to rate the quality of the evidence, and to assess the strength of the recommendations taking into account the balance between benefits and harms, resource use, and feasibility considerations. The GRADE method also recognises the collective patient perspectives 5 ; the strength of the recommendations is also affected by the patients’ appreciation of advantages and level of acceptability of disadvantages of the intervention, such as side effects and treatment burden. Worldwide, patients and patient representatives increasingly take part in the development of guideline recommendations 6 . Next to patient participation on a collective level, efforts are made to adapt or enrich guidelines so as to facilitate patient participation on an individual level, in clinical decision-making 7 . Patient participation is especially important in case of preference-sensitive decisions where multiple options exist, or where the benefits and harms of the intervention may be assigned a different weight by different patients 8 . Illustrative examples to facilitate patient participation in clinical decision-making are patient versions of a guideline such as a lay summary, or patient decision aids for specific preference-sensitive decisions attached to the guideline document. Some guidance for content of lay summaries of guidelines is provided by the Guidelines International Network 9 . In 2006, standards were formulated for the content of patient decision aids by the International Patient Decision Aids Standards (IPDAS) group, a multi-stakeholder process that led to a self-assessment checklist 10 . Further work led to a measure IPDASi 11 and a set of criteria that should be met to achieve a ‘minimum’ acceptable standard 12 . Guideline developers are experimenting to derive the information for patient decision aids – evidence on benefits and harms of interventions and on patient considerations and patient preferences – directly from the guideline 13 . Much is also happening with respect to the development of patient-centred knowledge tools such as patient versions of a guideline or patient decision aids in the Netherlands, on various sides of the care equation 14 . Patient organisations are gaining a more accurate picture of the information needs that these tools must satisfy. Professional and scientific associations feel a responsibility to ensure the accuracy and effectiveness of medical information supplied via such tools. Web and tool designers continue to introduce ever more user-interface friendly tools. For this study, we used the following definition: a patient-directed knowledge tool synthesizes and distils the highest quality knowledge and research, is aimed directly at the patient (and next of kin), with the goal to engage patients in dialogue or deliberation during a clinical encounter, Valorisation chapter