Developing quality criteria for patient-directed knowledge tools related to clinical practice guidelines. A development and consensus study.

BACKGROUND: Patient-directed knowledge tools such as patient versions of guidelines and patient decision aids are increasingly developed to facilitate shared decision making. In this paper, we report how consensus was reached within the Netherlands on quality criteria for development, content and governance of these tools. METHOD: A 12-month development and consensus study. The consortium worked on four work packages: (a) reviewing existing criteria; (b) drafting the quality criteria; (c) safe-guarding the acceptability and feasibility of the draft criteria by participatory research in on-going tool development projects; and (d) gaining formal support from national stakeholders on the quality criteria. RESULTS: We reached consensus on a 8-step guidance; describing minimal quality criteria for (a) the team composition; (b) setting the scope; (c) identifying needs; (d) the content and format; (e) testing the draft; (f) finalizing and approval; (g) dissemination and application, and (h) ownership and revision. The participants of the on-going tool development projects were positive about the quality criteria in general, but divided as to the degree of detail. Whereas some expressed a clear desire for procedural standards, others felt that it would be sufficient to provide only general directions. Despite the different views as to the degree of detail, consensus was reached in three stakeholder meetings. DISCUSSION: We successfully collaborated with all stakeholders and achieved formal support from national stakeholders on a set of minimum criteria for the development process, content and governance of patient-directed knowledge tools.

Shared decision making, a buzz-word in the Netherlands, the pace quickens towards nationwide implementation .

Currently, shared decision making (SDM) is on the agenda among target patient representative groups, policy makers and professional bodies. Although the International Conference for Shared Decision Making (ISDM) 2011 generated a positive boost, hesitation was also felt among Dutch clinicians, who are challenged by many new tasks. No hesitation is seen among the majority of patients, opting mostly for the SDM model. We haven't reached these patients' needs fully yet, given disappointing research data on patients' experiences and professional behaviour. There is plenty of room for improvement in daily practice, for which many best practices are being designed and increasingly implemented, such as national campaigns to empower patients, central governance of patient decision aids that are developed along clinical practice guidelines, postgraduate training, collaborative learning and system changes, and merging goal setting and SDM in complex care. This is explicitly supported by the Dutch government, the Ministry of Health, patient groups, professional bodies and health insurers. The culture shift in the minds and hearts of patients and clinicians has started but is still ongoing. Enthusiasm for this way of working could be undermined if SDM is defined and implemented in a simplistic, dogmatic manner leading to irresponsible transferring of the professionals' uncertainty, responsibility, and decisional stress to patients.