Page 112 - Shared Guideline Development Experiences in Fertility Care

Chapter 5
Discussion
is study shows that a specialized online participatory tool enables patient partnership in CPG development in the case of Dutch infertile patients. e tool enabled a broad and representative target group that participated in the clinical guideline development process by delivering a clear and prioritized set of recommendations that meet the statements of the GLIA instrument. Furthermore, according to the relatively high SUS scores, participants quali ed the tool as highly usable. We expect that this specialized online participatory tool has generic characteristics and could be adapted to every healthcare setting.
Our original wiki-inspired tool was developed and based on the results of a previous evaluation study, as well as custom t to clinical guideline development in general and to the partners in the clinical guideline development process, particularly the patients [20]. us far, with the exception of our previous pilot study, this is the rst study that presents a feasible tool for facilitating patient partnerships in clinical guideline development by enabling a collaborative of patients to actively participate by delivering prioritized high-quality recommendations for Dutch clinical guidelines on infertility.
Both research on wiki-inspired tools and on other online tools to facilitate patient partnership still mainly focus on (guideline-derived) quality products, such as information lea ets and shared decision-making tools [5–10, 21].
With respect to the engagement of patients in the guideline development process, the use of other instruments such as focus groups or individual interviews has been described previously [11–19,32]. However, apart from the usability of these instruments in previous stages of the clinical guideline development process (i.e. shaping the key questions, de ning/selecting related outcome measurements, and considerations), the actual usability of these kinds of instruments in the formulation of recommendations can be debated. Firstly, the outcomes of these interviews cannot be translated into clear recommendations directly. Secondly, members of the guideline development groups are challenged to transform patients’ input into recommendations that correspond to patients’ views. Furthermore, the tool presented in this study engages far more patients compared to the restricted number of patients involved in interviews or focus groups, which can also be time consuming, laborious, and bias sensitive.
ese barriers may also apply when patients’ representatives participate in the guideline development group. ese patients need to represent all patients who
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