Patient advisory board for dementia research (Part‐Beirat): survey on knowledge on participatory research

Abstract

AbstractBackgroundParticipatory research refer to the process of actively involving people with lived experience of a condition into the research process to improve its relevance, quality, and impact. Evidence indicates that engaging patients in research increases recruitment rates and supports researchers in obtaining funding, developing study protocols, and selecting appropriate outcome measures. The challenge is to establish a sustainable structure to include patient groups which are underrepresented yet, such as patients with neurodegenerative diseases.ObjectiveTo develop, implement, and evaluate a patient advisory board (the “PART‐Beirat”) facilitating involvement in research at the Rostock University Medical Center. As part of the project, we examine the prior knowledge and attitudes toward participatory research.MethodThe project consists of three phases over three years and is supported by the Robert Bosch Stiftung. The first phase involves establishing the PART‐project’s organizational structure, developing key documents and procedures, collecting knowledge (e. g. systematic reviews, survey) and raising awareness. In the second phase, we will connect people with lived experience with researchers to establish topic‐specific (neurodegenerative diseases) PART‐advisory boards. In the third phase, we will increase the number of projects within the PART‐Beirat, monitor their progress and share best practices across the research landscape. In phase one, we conduct a standardized survey on the current knowledge on participatory research among older adults. The questionnaire is based on a previous study conducted at the University of Zurich in 2020.ResultThe survey covers participants’ prior knowledge and attitude towards participatory research, willingness to engage as well as time they would want to invest into participatory research. Data collection of the survey will begin in January 2023. Descriptive results of the survey will be presented.ConclusionAt present, we are underway to develop the organizational structure of the patient advisory board to involve hard‐to‐reach patients and caregivers (PART project). The results of the survey will help us to identify the current level of knowledge on participatory research as well as attitudes towards and willingness to contribute to participatory research. This will provide us with a baseline which we hope to improve in the next three years with the establishment of the PART‐Beirat.