STARDIT/Involving ASPREE-XT participants in co-design of a future multi-generational cohort study
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Description: Research which follows a population of people over time is a valuable way to learn about what contributes to both wellness and disease. Some studies of this kind look at multiple generations and such studies have had significant positive impacts on public health. However, such studies are challenging to establish and expensive to maintain.
It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension study (ASPREE-XT) would be a good basis for a future multigenerational research study (MGRS). There is evidence that involving potential participants in co-designing research can improve the quality of the study design, recruitment and acceptability of the research. A team of people including a current ASPREE-XT participant were involved in planning how potential participants would be involved in the co-design process. An advert was sent to 14,268 participants of the ASPREE-XT observational cohort study to invite them to be involved in the process of planning a future multi-generational research study.
Fifty-nine ASPREE-XT participants were interviewed by telephone and 18 attended a face-to-face workshop event. We used a newly developed standardised format to plan and report how participant involvement activities positively impacted the study design (Standardised Data on Initiatives - Alpha Version 0.1).
Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. This case study provides evidence that including participants in the design of a research study positively impacted the study design, participants and researchers.
Dates
State completed
Start 2017-08-17
End 2019-03-01
Form updated 2024-10-02
Report authors
Location
Australia
Aims
The aim of this study was to report as a case study the processes of involving ASPREE-XT participants in the co-design of a proposed multi-generational research study, and how this impacted study design.
Keywords
Co-design
Multi-generational
Elderly
Participatory
Standardised reporting
Dementia
STARDIT
Case study
Genomics
Category
research
Inputs
Outputs and impacts
publication/report/document
STARDIT Alpha version report (link)
Impact: Read and accessed, proof of concept for describing and comparing case studies
publication/report/document
peer-reviewed article published (link)
Impact: accessed by over 1200 people as of 2022.08.11
Script error: No such module "STARDIT".
Identifying information
| PDF description field | PDF response field | Structured wikidata |
| Initiative name | Involving ASPREE-XT participants in co-design of a future multi-generational cohort study | |
| Geographic location or scope | Australia | |
| Date range (planned start and end dates of initiative) | 2017-2019 | |
| Purpose of the initiative | Participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study, in order to improve research design, relevance, acceptability and recruitment. | purpose = co-design (of cohort study)
purpose = improvement (of research design, relevance, acceptability, participant recruitment) |
| Organisations or other initiatives involved (list all if multi-centre) |
|
organizer = Monash University (affiliation string Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine)
organizer = La Trobe University (affiliation string School of Psychology and Public Health) |
| Funding sources | Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University | funder = Monash University (affiliation string Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine) |
| Clinical trial registration details (if applicable) | https://clinicaltrials.gov/show/NCT01038583 | |
| Ethics approval (if applicable) | Monash University | |
| Other relevant information (free text) | This report describes involving potential participants in co-designing a proposed multigenerational research study. It would recruit participants from the existing ASPREE-XT study. | purpose = co-design (of cohort study)
significant event = participant recruitment (location of formation ASPREE-XT study) |
At which stage of the research project has this report been written? Select from:
|
After the co-design process occurred, but before the proposed multi-generational research study has been approved or funded. | |
| Methods of the initiative (what is planned to be done, or is being reported as done) | Participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study. | describes a project that uses = Participatory action research |
Report authorship
| Name | Jack Nunn |
| Public domain profiles, institutional pages | https://scholars.latrobe.edu.au/display/j2nunn |
| Open Researcher and Contributor ID (orcid.org) | https://orcid.org/0000-0003-0316-3254 |
| Tasks in report completion | Main author |
| Date of report authorship | 22nd July 2020 |
| Key contact at initiative for confirming report content | Paul Lacaze, PhD, Head, Public Health Genomics Program, Paul.Lacaze@monash.edu |
Involvement
| PDF description field | PDF response field | Structured wikidata |
| Who was involved |
|
|
| Specific tasks of this person or group (list as many as possible) – including any information about why certain people were included or excluded in certain tasks | Everyone listed above was involved in codesigning every stage of the process. This included refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on questionnaires, analysing data, informing planning, presenting information to participants, interpreting data, and participating in email surveys. By piloting different versions of the questionnaire, we were able to get feedback from participants that the wording of the question about involvement was difficult to understand. In partnership with participants and the study team, the wording was changed to include a short statement explaining what 'involvement' meant and the perceived benefits (see Additional file 2). | ? |
| How were these people involved (what methods were used) | Face to face meetings, email communication, shared online documents, teleconferences. | has quality = involvement (of contributor; uses meeting, email, online document, teleconference) |
| Enablers of involvement (what do you expect will help these people get involved – or what helped them get involved) | Giving people time to read resources. Clear communication about the intention of involving people. | good |
| Barriers of involvement (what do you expect will inhibit these people from getting involved – or what inhibited them from getting involved). Are there any known equity issues which may contribute? | Face-to-face meetings were difficult to organise. Some participants and participant representatives were elderly or lived in remote areas, so face-toface meetings needed to be minimised where possible. | has quality = difficulty (applies to part meeting, elderly people, distance; has cause
distance, age of a person; has effect minimization) |
| What was the outcome or output of the involvement of these people? What changed as a result of involving people? | Improved participant information resources, improved wording that is culturally appropriate, improved question design for interviews, improved learning resources for participants, improved co-design process. | has effect = improvement (of information resources, culturally appropriateness, question design, learning resources, co-design; intended public research participant) |
| Which stage of the initiative were these people involved? (select from list of pre-defined stages or allow ‘other’) | All stages | |
| What was the estimated financial cost for involving people. How much time did it take. Were there any costs that cannot be measured financially? | $10,000 AUD was the estimated cost for the process. The total number of hours, including staff time was estimated to be around 200, including telephone interviews and excluding data analysis.
Some people who attended events were unable to work or care for people on that day, and these costs were not calculated. |
cost = $10000
duration = 200 hours (stated as The total number of hours, including staff time was estimated to be around 200, including telephone interviews and excluding data analysis. Some people who attended events were unable to work or care for people on that day, and these costs were not calculated.) |
| What worked well, what could have been improved? Was anything learned from the process of involving these people? | The process took longer than expected. There was confusion over what ethics approval was required in order to involve people, especially people who are participants in an ongoing study.
|
surely has to be free text? |
Mapping financial or other ‘interests’
| Describe any financial relationship or other interest this person has to this project | Three members of the study team were employed by Monash University during this process. |
| Describe any conflicting or competing interests | N/A |
Data
| Who is the data from this intervention shared with? | It will be published open access |
| How is it stored and hosted? | It will be shared on a public domain repository. |
| Who is analysing the data? | The study team described above |
| What methods will be used to analyse the data (including a link to any relevant code and information about validity) | We used case study methodology to describe our experience involving participants in the co-design of the proposed study. We collected and analysed both qualitative and quantitative data during the involvement activities. |
| We analysed data from audio recordings of interviews and events, meeting notes, emails, reflexive diary entries and survey responses of study investigators. Coding and thematic analysis of qualitative data was carried out by two authors independently and checked by other authors. | |
| How is information about this data disseminated? |
|
| Who ‘owns’ the data or claims any kind of ‘intellectual property’ (include relevant licensing information) | Monash University |
| Who controls access to the data | Monash University |
| How is/will the data be ‘Findable, Accessible, Interoperable, Reusable’ according to the FAIR criteria? | Data will be shared in the public domain and licensed under a Creative Commons license. |
Impacts and outcomes
| What new knowledge has been generated? (if appropriate, include effect size, relevant statistics and level or evidence) |
|
| Describe how the learning or knowledge generated from this initiative has or will be used |
|
| How has or how will this be measured? | Future STARDIT reports |
| Who is involved in measuring this? | The study team |