Abstract
Background/Aims Meaningful patient-centered research requires the engagement of patients at multiple stages of the research process. The process and degree of patient engagement may differ depending on study design, methodology, and research question. However, there are few tools and guidelines on how to engage end-users in the research process. The goal of this project was to develop operational infrastructure, processes, and research designs and methods that facilitate the systematic engagement of members from the Kaiser Permanente Colorado (KPCO) region throughout the entire life cycle of research.
Methods With input from investigators, staff, operational stakeholders, and the human subject protection team, we identified relevant resources and developed a toolkit on member engagement. The process included: 1) Focused literature review on processes of stakeholder engagement in research; 2) Inventory of research projects with components of patient engagement; 3) Stakeholder interviews to identify existing operational processes and tools for member engagement within and outside of KPCO. These informed the development of a comprehensive toolkit.
Results The toolkit includes an annotated bibliography of the stakeholder engagement literature, a guide to the identification and initial engagement of members, principles for engagement of members in research, guidelines for human subject considerations for member engagement, and a set of research case examples. The toolkit was tested for usability and disseminated to personnel in the Institute for Health Research (IHR).
Conclusions Several existing processes and resources were identified for use in the research context, however these were fragmented and difficult to access systematically. The toolkit brings together these existing processes and resources for member engagement and supplements them with additional principles for engagement. After further testing to understand the toolkit’s contribution to project development and completion, it could serve as an example for other HMORN partners for development of similar resources.
