Page 101 - Shared Guideline Development Experiences in Fertility Care

Online tool for patient partnership in guidelines
Introduction
To pave the way to patient-centred care, patient partnership as a basic principle
of healthcare should be rmly embedded [1–4]. e Internet plays a crucial role
herein. Patients 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 [5–10]. However, in clinical guideline development, which
can be seen as the basis for optimizing high-quality patient-centred care, patient
partnership is still underdeveloped. Determining factors in choosing whether
to more or less actively involve patients in the clinical guideline development
process can probably be identi ed as practical barriers. ese barriers include the
various methods that exist for patient involvement in guideline development, the
haziness in how and when to apply these methods most e ectively, the di culty in transparently integrating patients’ preferences into guideline recommendations,
the representativeness of participating patients, and costs [11–19]. Likely, online
tools are relatively new in this eld, but may overcome these barriers and facilitate
patient partnership in guideline development. Publications regarding the use
and evaluation of collaborative online writing tools to involve patients in the 5 development of quality instruments are scarce, but promising [20, 21].
A previous pilot study showed that a wiki is a promising and feasible tool for the participation of a broad group of non-organized infertile patients in Clinical Practice Guideline (CPG) development [20]. However, this tool still needs customization to bridge patients’ preferences for its use and the goal of directly collecting prioritized, authentic patient recommendations for CPGs [20]. Additionally, the lack of transferability of this tool to other target groups is a potential drawback.
erefore, we developed and implemented a specialized online participatory tool that can be adapted to various healthcare areas (in this study, fertility care) and that is tailored to the (dis)advantages that resulted from the pilot study. is preliminary tool presented in the pilot study includes a basic wiki tool for formulation and prioritization of patients’ recommendations. We evaluated this specialized online participatory tool for patients regarding its use and bene ts for CPG development.
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