Page 153 - Shared Guideline Development Experiences in Fertility Care

number of unique visitors and recommendations obtained, although it is also a
laborious method. In Chapter 5 we discussed the evaluation of a more specialized
and re ned online participatory tool that focussed on the successful improvement
of the usability for patients and guideline developers. Both chapters add to the
knowledge on empowering patients in the development of clinical guidelines.
e specialized online participatory tool described in Chapter 5 may be implementable in clinical areas other than infertility, although this would require cooperation from related professional societies and active patients’ associations.
erefore, we recommend that policy organizations introduce the tool to guideline development programs and support their use of it. is approach could motivate professional associations to implement this tool in the guideline development
process and support patients’ associations in increasing their role in guideline development. Chapter 4 also acknowledged that the Internet has an important role
in nding helpful information for patients’ clinical pathways. As such, it seems
important that reliable information is guideline based and digitized in the same
place as the guideline. Our tool could also be used to identify patients’ priorities
in research and informational needs. In the Netherlands, most decisions on how
to involve patients in the guideline development process are generally made by
the guideline development institutes and/or the medical specialty associations.
We acknowledge that time and cost restrictions play an important role herein.
With the recent introduction of the national guideline database and the hand-
in-hand development of guidelines in sections dedicated to one key question,
these challenges might play a more prominent role (www.richtlijnendatabse.
nl). Furthermore, there are also the risks that patients’ associations will be overwhelmed and unable to meet requests to participate or will need to decide
which sections they will participate in and which sections they will not. By having
a set of recommendations, which are continuously updated by patients already
developed, the use of an online participatory tool could help patients’ associations 7 and guideline developers gather input on a speci c subject without losing time. We
therefore suggest that guideline development institutes together with the Dutch Federation of Patients continue to explore patient participation in the guideline development process using tools such as our participatory tool.
Patients’ role in developing measures to guideline adherence
In addition to clinical e ectiveness, safety, and cost e ectiveness, patient- centredness is another important dimension of the quality of care [2]. e ultimate
Discussion
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