Awareness of and attitudes toward user involvement in research on aging and health : Protocol for a quantitative large-scale panel study

Background: User involvement is a requirement of most research funders. There is a growing body of literature exploring the benefits and challenges of user involvement in research, but such studies are scarce in the field of aging and health. Moreover, the majority of such research is qualitative, which limits the generalizability of results. The UserAge panel study will be instrumental in expanding knowledge that will benefit the quality and impact of user involvement in future research. Objective: The aim of this study is to determine the awareness and understanding of and attitudes toward user involvement in research among different categories of knowledge users and researchers over time. Methods: A panel study will be implemented with 3 different categories of knowledge users (people aged 60 years and older, informal carers, and professionals in health care and architecture) and researchers in aging and health. A professional survey company will collect data from all samples in parallel. Potential participants will be asked to complete the survey via telephone or online, or participants can request a paper survey to be sent to them in the post. A draft set of questions on attitudes and behavioral patterns related to research utilization and user involvement in research was compiled based on existing literature and input from the research team. Using a participatory approach, we engaged a user forum, where 8 older people and 3 researchers jointly refined the survey for time/length to complete, terminology, readability, and context. Data collected via the internet or telephone will be automatically processed, and data collected on paper forms will be entered in machine-readable forms. The survey company will store all data and deliver the quality-controlled database to the university for further storage. Analyses of frequencies and measures of central tendency will be used for descriptive purposes. To compare groups, state-of-the art statistical analyses will be used. Results: Data collection for the first study wave started in September 2019 and will be completed in spring 2020. Data will be ready for analysis following cleaning and quality control, which started during summer 2020 and will be completed autumn 2020. We anticipate the data collection for the second study wave to start in September 2021. Conclusions: This is the first quantitative large-scale panel study focusing on trends in attitudes toward, awareness of, and knowledge about user involvement in research on aging and health in Sweden. The results will generate new and important knowledge to advance the understanding of user needs and preferences as well as the relevance of user involvement in research on aging and health