Involving Elderly Research Participants in the Co-Design of a Future Multi-Generational Cohort Study

Abstract

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.

Standardised Data on Initiatives – STARDIT: Beta Version

“…8 This review was followed by an additional review conducted in 2020 led Nunn et al, which mapped international guidance for planning, reporting and evaluating initiatives across multiple disciplines 90 . STARDIT was also informed by a number of PAR projects, 37,41,42 and a report for the Wikimedia Foundation by the charity Science for All. 91 The charity Science for All has hosted the co-creation process since 2019.…”

“…STARDIT reports have also been used to describe a number of research projects, including data about who did which tasks, ethics approval, funding, methods and outcomes 37,41,42 . In health research, projects which have used STARDIT reports include participatory action research projects involving a large cohort study of >15,000 healthy, elderly research participants 43 , a protocol for precision medicine for Aboriginal Australians 44 , and a group of patients and families affected by a rare immunological disorder 38 , and a project involving extended family of donor-siblings who share the same sperm-donor father 37 . An environmental research project has also used STARDIT to report the initiative, which works with citizen scientists to locate critically endangered species using eDNA 45,46 .…”

“…The STARDIT-PM data about this processes showed a preference for being involved using online discussions, and the STARDIT report stated that involving people influenced the way the charity planned to involve people prioritising research in the future. 41 Examples of completed STARDIT-PM can be found in the additional files of a number of research projects 37,41,43 . Table 3 summarises questions which can be asked to map stakeholder preferences with respect to involvement in initiatives.…”

Standardised Data on Initiatives – STARDIT: Beta Version

“…STARDIT is already being tested by the Wikipedia-integrated open access peer reviewed WikiJournals, which has articles which are integrated into Wikidpedia. 26 STARDIT reports have also been used to describe a number of research projects, including data about who did which tasks, ethics approval, funding, methods and outcomes 25,27,28 Potential applications STARDIT's potential applications are summarised at in Table 1. Among the principal applications, STARDIT offers public access to standardised information which enables comparison of methods with the most impacts, such as ways of involving stakeholders in initiatives.…”

“…The STARDIT-PM data about this processes showed a preference for being involved using online discussions, and the STARDIT report stated that involving people influenced the way the charity planned to involve people prioritising research in the future. 27 Examples of completed STARDIT-PM can be found in the additional files of a number of research projects 25,27,78 . Table X summarises questions which can be asked to map stakeholder preferences with respect to involvement in initiatives.…”