Dunja Dreesens

68 Existing frameworks tend to focus on PDAs, and the CCCG taxonomy has a far broader scope than just patient-directed knowledge tools. The aim of our study was therefore, building on existing work, to develop a conceptual framework of patient-directed knowledge tools (190). Our objective was to create a framework that would identify existing patient-directed tool types, allow organisation of these types of tools by their purpose(s) and describe their core elements. The framework is intended primarily for tool developers, and possibly also for those who commission the development of tools, healthcare professionals and policy makers. It should help developers to identify where there is a gap or need for a tool to be developed, and how such a tool may best make information, knowledge and decision support available to patients (144). Methods We used a two-day consensus meeting with international experts. We are not aware of standards for reporting a consensus-based meeting. Instead, we followed the Standards for Reporting Qualitative Research (SRQR) as closely as possible, when writing the manuscript (191). To arrive at a conceptual framework of patient-directed knowledge tool types to engage patients and support patient decision-making within a short time frame, the initiators (TVDW, DD) and chair (JG) decided that a two-day, face-to-face meeting with experts was the most optimal design. We followed a consensus-based process based on a written meeting protocol (see annex A) (192-194). The meeting was audio-recorded, DD took minutes. JG and TVDW made field notes. The meeting took place in February 2016, in Leiden, the Netherlands. The participants were purposefully sampled from the Guideline International Network (GIN), International Shared Decision Making network (ISDM) and the professional networks of the initiators. The participants worked in different domains of knowledge (transfer), implementation and decision support, e.g. as tool developers, implementers or implementation researchers, decision-making researchers, or practitioners. The aim was to have representation from a range of countries, individuals with various professional backgrounds, and patients (see Annex B). There were two groups of participants; those who participated face-to-face in the group meeting and those who joined remotely for the conference call with the large group, or via e-mail. During the preparatory phase the participants received a list with relevant literature (see Annex C). This list included participants’ key articles – suggested by TVDW – and its aim was to achieve a common ground between the participants. They also received a list with possible knowledge tool types to be discussed (see annex D). The list was the result of a scoping review undertaken by initiator DD. The meeting protocol was also shared with the participants in this phase (see Annex A) (195). The experts were asked to add missing literature, review the proposed tools and comment on the protocol. If the experts had queries on the provided tools, DD and TVDW provided information to clarify these issues, copying all participants. The meeting consisted of nine steps (see Table 1). In step 1, the face-to-face participant Chapter 4