Dunja Dreesens

76 Discussion We developed a working (or draft) framework containing five patient-directed knowledge tool types describing the purposes and (prototypical) core elements of these tools. There already exist other related frameworks; however, these tend to focus on patient decision aids. At the other end of the spectrum, the CCCG taxonomy takes a far broader view, incorporating all interventions for communication without a specific focus on knowledge tools, and without delineating the core elements of the interventions (59, 60, 205, 211). Conclusions As there exists an abundance of different patient-directed knowledge tools, with different names and mostly unclear definitions, our working framework can help tool developers, people who commission the development of these tools, policy makers, patients and healthcare professionals to discern between the different tools, and to identify to which tool type it belongs, which purposes it serves and which core elements it should contain. Possibly, when there is more clarity on development, content and purpose of the tool, it may lead to a better understanding of the roles of, and uptake of, the tool. We feel that the field of tools development and implementation might profit from initiatives such as this one; it might provide the sought for direction. Regarding the discussion whether to use only CPGs as basis for patient-directed knowledge tools, such as ePDAs, the group discussed the benefits of harmonizing evidence summaries across these tools, also within the context of updating content. Such CPGs and accompanying PDAs have been developed, for example within the MAGIC-project, providing proof of concept for this approach (144, 165, 201). New (types of) tools will emerge. We can use these to test our working framework by assessing if the new tool fits within the current types, whether it requires adding a new tool type, additional purposes or core elements to the framework, or if it is a different type of tool not belonging within the framework. Next steps are to review the framework thoroughly with a broader group of stakeholders, including patients and other users. Working with the framework will demonstrate if it is helpful and complete regarding tool types, purposes, and core elements. For example, it may be helpful to discuss whether or not merging the last two purposes (‘support SDM’ and ‘engage in shared decision-making’) which would be a useful revision to the framework. A first cautious check of the framework took place at the International Shared Decision Making (ISDM) Conference, Lyon, in 2017 (212), meeting general agreement and receiving no major comments with respect to content. The framework, a work in progress, could be further enhanced by identifying which effect outcomes of the tools are supported by evidence, and describing the core elements in more detail. Additionally, it is important to consider the implementation and use of these tools, for instance by exploring what skills or support patients need to be able to use them (213). Chapter 4