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Table 1 Definitions of terms

From: Involving elderly research participants in the co-design of a future multi-generational cohort study

Involvement – The words ‘involvement’ or ‘being involved’ describe the concept of people being ‘involved’ in research. This is when research is carried out ‘with’ people rather than ‘on’ them [18]. ‘Involvement’ can also be defined as when other people aside from the research team, such as the public, patients, research participants and other stakeholders, actively contribute to the research process [19]. It is the ‘active involvement’ in shaping and guiding research, rather than only providing data  [25].

Participant – a person who participated in the process of sharing views and perspectives about the proposed MGRS, including sharing views about preferences for any future involvement. The term ‘ASPREE-XT participants’ will be used when specifically referring to participants from the existing study.

Participant advisor – before inviting people to become participants, it was necessary to involve a small number of participants to help advise and plan the process. These participants were chosen from an existing reference group of ASPREE-XT participants.

Stakeholder – this term includes anyone who has a ‘stake’ in the research, in particular those who have important knowledge, views or perspectives that should be taken into account [20, 22]. In this paper it refers to participants, participant advisors and ASPREE-XT study team members (including researchers, ASPREE-XT participant assessors and lead investigators).

Study team – this process was guided by the study team, who consisted of academic researchers, ASPREE-XT participant assessors, a participant advisor and a lead investigator.

The process – this term will be used to describe the process of involving ASPREE-XT participants by inviting them to share views and perspectives about a potential future MGRS. This process includes the co-creation of this case study with participant advisors.

Participatory action research (PAR) - this term describes a number of related approaches, including forms of action research which embrace a participatory philosophy and include ‘co-design’ and ‘co-production’ of research [23] (p1).