Dunja Dreesens

183 5 TEST The development team will present the draft to the relevant professional, scientific and patients’ associations for the purpose of obtaining feedback. The parties will assess whether the patient perspective is sufficiently reflected, ensure understanding of people with low literacy, and if the medical content is accurate. If the guideline working group is still active, the draft will be presented to that group for feedback as well. 6 FINALISING The development team establishes the final knowledge tool and presents it to the relevant professional, scientific and patients’ associations for approval. This regards approval at the process level, i.e. concerning the creation of the knowledge tool. Ownership is determined and formally established. 7 DISSEMINATION The tool will ideally be submitted to the national Health Care Institute as a section of the relevant guideline(s). The knowledge tool becomes accessible to the public and is preferably made available at a central location, including points for attention to facilitate the actual application/implementation in healthcare practice. 8 OWNERSHIP The owner(s) of the knowledge tool will manage the tool and determine when the information is due to be revised: in any case when the expiry date has been reached. Ideally, the need for revision of the tool will be considered when the guideline as a whole is revised. Discussion We successfully collaborated as a consortium of researchers and end user representatives, with patient participation realised at the highest level of involvement, to achieve formal support from national stakeholders on a set of minimum criteria for the development process, content and governance of patient-directed knowledge tools related to clinical practice guidelines. What we provide is not a detailed ‘recipe’ for development but rather a series of recommendations based on the ‘state of the art’ and feasibility considerations. A number of potential limitations should be mentioned. Our project was explicitly embedded in the guideline context, we did e.g. not include patient versions of systematic reviews. The guideline context may be a limiting context for developing patient-directed knowledge tools. As the starting point of a clinical practice guideline is predominantly the clinicians’ perspective, important issues for patients may not be covered in the guideline. The assignment from the National Health Care Institute was aimed specifically at guidelines in the context of curative health care. While the literature is unclear in this regard, it is possible that the content of the guidance might have been different had representatives from public health, long-term and palliative healthcare been included. One strength of this project is the systematic approach Valorisation chapter