Page 152 - Shared Guideline Development Experiences in Fertility Care

Chapter 7
Patients’ role in writing the guideline
Both in the Dutch guideline manual and international manuals, the role of patients in the guideline development process is unstructured, lacking in transparency, and sometimes unclear. Although patient participation in clinical guideline development is emphasized, it faces practical challenges [32,33]. Firstly, several methods have been suggested and the level of participation of patients varies from very low and passive (i.e. exploring patients’ preferences in interviews or focus groups, asking patients’ representatives to comment on dra guidelines) to higher and more active (i.e. including patients or patients’ representatives in the guideline development group) [34,35,47–51]. Secondly, ‘golden rules’ on how and when to apply these methods most e ectively are lacking [37,38]. irdly, all these methods are restricted to including a selected number of patients or patients’ representatives. Fourthly, integrating patients’ preferences into guideline recommendations is di cult and the result of their input is o en unclear [52]. Fi hly, important organizational (i.e. recruitment of participants), nancial (i.e. costs of patients’ education or for conducting focus groups), and socio-political barriers (i.e. guideline developers’ resistance to including patients in the guideline development group) also impede patient participation in guideline development [50]. Finally, studies on the e ectiveness and impact of patient participation are limited [32,37]. ese challenges are determining factors in choosing the extent of involving patients in the clinical guideline development process. In Chapters 4 and 5, we assessed the feasibility of two interrelated participatory online tools to facilitate patient participation in clinical guideline development.
Using online participatory tools to involve patients
e Internet has been rapidly evolving from a ‘one-way download medium’ to a ‘participatory medium’ in which consumers are now playing a more active role. is evolution has a considerable impact on the healthcare system and Web 2.0 technologies are now increasingly used to empower patients. For example, patients can become active partners in their own treatment by using online decision- making tools, accessing and writing patient information, accessing their personal health record, and even connecting to medical doctors or professionals via online communities [53–59]. Using an online participatory tool may solve most of the challenges regarding patient participation in clinical guideline development. In Chapter 4 we concluded that a conventional wiki as a participatory tool for patients in guideline development for Dutch fertility care is feasible considering the high
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