Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study
Additional Document Info
Objectives: To report as a case study the process of involving study participants and how this impacted the co-design of a proposed multi-generational research study, using a novel standardised reporting tool. Background: An advert was sent to 14,268 participants of the ASPREE-XT observational cohort study to invite them to be involved in co-design and planning of a future multi-generational research study. Participants were aged 74 years and older from Australia, located in both metropolitan and rural locations. Interventions: We used participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study between 2017-2019 using newsletters, telephone interviews and an in-person workshop. Primary and secondary outcome measures: We used the ‘Standardised Data on Initiatives (STARDIT)’ Alpha Version to plan and report how participant involvement activities positively impacted the study design. Results: Fifty-nine ASPREE participants were interviewed by telephone and 18 participants attended a face-to-face workshop event. Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. Learning points included the importance of maintaining the ideals of the ASPREE study (respect, quality and transparency); research participants’ preference for the option of receiving results (including genetic results); participants’ need for involvement in decisions about recruitment, data access, governance and other ethical issues; and the preference for different communication methods, including both face-to-face and online methods. The process was highly valued by all stakeholders, including research participants, study staff and lead investigators. Involvement of participants was described by the lead study investigator as “enormously helpful”. Conclusions: This case study provides evidence that including participants in the design of a research study positively impacted the study design, participants and researchers. Using a standardised reporting tool to describe the methods and impacts provides a way for learning from this case study to inform future research studies planning to involve people.