Page 113 - Shared Guideline Development Experiences in Fertility Care

Online tool for patient partnership in guidelines
the guideline is focussed on. Our specialized online participatory tool could form an excellent aid to represent the views of a broad group of patients and to take a stronger position in the guideline development group for involved patients’ representatives. Another strength of this tool is that moderating and prioritizing recommendations is continuously performed by patients themselves, which could minimalize e orts. We especially believe that our participatory tool is highly usable in guideline topics for which the body of evidence is rapidly growing and needs a nearly continuous update process.
Nevertheless, some limitations to this study should be mentioned. Firstly, we acknowledge that the level of participation (i.e. 95 of the 3028 visitors) is low,
as is the willingness to ll out a usability questionnaire (i.e. 45 of the 95). e
fact that registration was mandatory for using the tool and the introduction of
a new tool could have played a signi cant role herein. Secondly, we conclude
that registered female participants of this study are representative for the Dutch
infertile population regarding important patients’ characteristics, but we must acknowledge that participants still represent a speci c subgroup that is in a more
advanced treatment phase, have a longer duration of infertility, and are more
highly educated. One might argue whether patients who are starting an infertility
care pathway can shape speci c recommendations for high-quality fertility care 5 since they are unable to predict the forthcoming steps of their care pathway. is
inability could explain the fact that registered participants form speci c subgroups regarding the high duration of treatment and the more advanced treatment phase they are in. Moreover, the authors acknowledge challenges in the generalizability of the tool to other healthcare elds and in international settings. e level of uptake of this tool by health policy organizations might play a crucial role therein. is could motivate professional associations and clinical guideline development organizations to implement it in the guideline development process. Support from patients’ associations by increasing their role in guideline development is recommended. Furthermore, it is assumed that the implementation of the tool in guideline development practice and using patients’ recommendations directly in the guideline can lead to a variety of discussions on nancial and political levels (i.e. these might be contradictory to professionals’ recommendations). erefore, clear arrangements on this point should be made. Finally, as with all other forms of patient involvement in clinical guideline development, concrete evidence of the impact of patient involvement on the quality of care is still lacking.
Our tool might be implementable in healthcare settings other than infertility, but 111