Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jan 10, 2020
Date Accepted: Jun 21, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Protocol for study investigating the awareness of and attitudes towards user involvement in research on ageing and health: a Panel Study
ABSTRACT
Background:
There is a growing body of literature exploring the benefits and challenges of user involvement in research, though scarcely in the field of ageing and health. Moreover, the majority of such research is qualitative, which limits the generalizability of results. While user involvement is a requirement of most research funders, there is still limited knowledge about the awareness of and attitudes towards user involvement among ageing and health researchers and the different types of users who could be involved. The UserAge Panel Study will be instrumental in expanding such knowledge that will benefit the quality and impact of user involvement in future research.
Objective:
The Panel Study has two primary aims addressed towards different categories of knowledge users and researchers in ageing and health in Sweden: What are the awareness of, understanding of and attitudes toward user involvement in research? Are the awareness of, understanding of and attitudes toward user involvement in research changing over time?
Methods:
A panel of three different categories of knowledge users and researchers in Sweden (people aged 60 years and older; informal careers and professionals in health care and architecture, researchers in ageing and health), will be recruited and surveyed repeatedly over time. A professional survey company will implement the survey, collecting data with all the samples in parallel. Potential participants will be offered to complete the survey via telephone interview, online or 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. Applying a participatory approach, we engaged a user forum where participants jointly refined the survey for time/length to complete, readability, and putting questions into 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 and subsequent data analyses.
Results:
This is the first quantitative large-scale panel study focusing on trends in attitudes, awareness and knowledge about user involvement in research on ageing and health in Sweden.
Conclusions:
The results will generate new and important knowledge advancing the understanding of user needs and preferences as well as the relevance of user involvement in research on ageing and health.
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