Enthusiastic connectors

Abstract

Patients are becoming more involved in scientific projects, as evaluators, advisors or partners of academic researchers. From a science communication perspective, these experiences are a fascinating laboratory about the challenges of knowledge sharing and exchange between stakeholders with very different perspectives. Little is known about those who facilitate the blending of the experiential knowledge of patients and the scientific knowledge of researchers within these initiatives.

This thesis explores the professional profile of practitioners within patient organizations that are responsible for patient participation in research projects. Their position is analyzed from the perspective of the theory of knowledge brokering, which puts them at the center of the flow of science communication between the stakeholders. While existing literature has studied the emerging role of knowledge brokers in the transfer of scientific knowledge to decision-makers in healthcare, this thesis offers an original perspective on the context of patient participation, and compares the activities, professional knowledge, skills and personal attributes of the practitioners with that of knowledge brokers in healthcare. The needs that the practitioners express in terms of improvement of both their own profession as well as the process of patient participation have been analyzed using the concept of professionalization, which puts the focus on the development of new professional profiles.

A predominantly qualitative approach was chosen to gather reflections of nine practitioners on their current and desired professional profiles. They were selected after identifying Dutch patient organizations involved in participatory research projects. The methodology included semi-structured interviews and a card-sorting exercise inspired by Q methodology in which they were invited to rank skills and personal attributes related to knowledge brokering. The practitioners emerge as “enthusiastic connectors,” who put an emphasis on knowledge brokering activities and skills that foster the interaction between stakeholders, rather than on knowledge management. Many of the aspects they report as being part of their professional profile are consistent with those reported about knowledge brokers in the healthcare sector. However, the particular context of patient participation shapes their specific characteristics mainly related to their closest stakeholder, the patient. The practitioners confirm that academia, policy makers and funding organizations are increasingly interested in patient participation, and call for organizational changes in order to face this demand: increased recognition as a partner by external stakeholders, further internal recognition within their organization, as well as adequate human and financial resources.

The thesis serves to gain both academic insight, useful for developing measures of effectivity of knowledge brokering and further study, as well as practical insight, useful for recruitment of knowledge brokers and further professionalization of knowledge brokering and patient participation processes.