Integrating patient preferences and patient knowledge in an evidence-based guideline

Background/objective: Patients have an important and increasing role in public decision-making processes. In guideline development, patients are thought to contribute from a different perspective than those of health care providers, researchers and policy-makers. However, from the literature it is known that patient participation shows disappointing results in practice. It is difficult to explicitly incorporate the patient perspective in an evidence-based methodology of guideline development. Although patients are facilitated with participation possibilities this does not automatically mean that they can influence the decision-making process. In this research the development process of the lichen sclerosus (LS) guideline -in which the lichen sclerosus patient organisation (Stichting lichen sclerosus, SLS) participated- is explored in dept. The objective of this thesis is to explore how LS patients can contribute (with their experiential knowledge and preferences) on the content of the LS guideline, how LS patients can influence the decision-making processes and in what way the produced knowledge of the guideline is justified. The main research question addressed in this thesis is: How and to what extent are patient preferences and patient knowledge incorporated in the lichen sclerosus guideline? Methods: In an intensive ethnographic research project beginning from November 2011 until May 2013 various qualitative methods are used to collect empirical data. Overall, more than twenty meetings have been attended and observed all throughout the Netherlands. Nine important stakeholders have been interviewed. Moreover, formal documents, minutes, reports and email exchanges from the start of the guideline development process (January 2009) have been analysed. Results: The results of this research are structured according to three concepts; participation, representation of LS patients and experiential knowledge. The concept participation clarifies the methods of patient participation within the LS guideline development process. The representation of LS patients defines the ways in which the LS patient has been represented and all the work that the LS patient representative has done in order to strengthen his role and tasks. In what way the produced knowledge is justified in the LS guideline is clarified by the concept experiential knowledge. Furthermore, Sherry Arnstein’s participation ladder is used to help explain the contribution of different methods of patient participation. The framework of Moreira about the four repertoires of evaluation is used to explore and understand the different judgements about knowledge. Conclusion: It proves to be difficult to methodologically justify and incorporate patients’ preferences and knowledge in an evidence-based methodology of guideline development. This is due to the fact that all four repertoires of evaluation have their influences on the development of the guideline. It turns out that the technical robustness of the produced knowledge within the guideline and the methodological adequacy of the proceedings in which this knowledge is established prevents to fully incorporate patients’ preferences and knowledge. The formulation of starting questions for the guideline is an important tool to explicitly introduce the perspective of the patient. But the fact that starting questions are not (explicitly) answered does not mean that patients do not contribute with their specific knowledge and preferences or that the patient perspective is not taken into account during the guideline proceedings. The explicit referral and quantitative measurement of the input of patients within the guideline is not an adequate measure of the contribution that patients have with their knowledge and preferences. Hereby it should be mentioned that the incorporation of LS patients’ preferences and knowledge are most visible within the annex ‘the patient perspective’ due to the chosen methodology of the whole LS guideline process. By considering ‘the patient perspective’ in the annex, experiential knowledge from patients has certainly been incorporated in the evidence-based guideline, although looking at the guideline per se one could not ascertain that. The input concerning this specific knowledge within the LS guideline is due to the fact that the patient representative has been actively participating within the whole process. All the (in)formal work that the patient representative has done contributed to the extensiveness in which the guideline is patient-centred.