Evidence map›Paper›PMID 41267141›Full record

ArticleResearch involvement and engagement2025

Engaging longitudinal cohort participants in a research priority setting process for the Raine Study.

Michaela De Paolis, Saniya Abdul, Anne McKenzie, Rebecca Glauert, Gracie Cayley, Romola S Bucks, Diane Wood

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Michaela De PaolisThe Raine Study, School of Population and Global Health, The University of Western Australia, Perth, Australia.
Saniya AbdulThe Raine Study, School of Population and Global Health, The University of Western Australia, Perth, Australia.
Anne McKenzieSchool of Population and Global Health, The University of Western Australia, Perth, WA, Australia.
Rebecca GlauertThe Raine Study, School of Population and Global Health, The University of Western Australia, Perth, Australia.
Gracie CayleyHealing Kids, Healing Families, The Kids Research Institute Australia, Perth, Australia.
Romola S BucksThe Raine Study, School of Population and Global Health, The University of Western Australia, Perth, Australia.
Diane WoodThe Raine Study, School of Population and Global Health, The University of Western Australia, Perth, Australia. diane.wood@uwa.edu.au.

Funding

Western Australian Future Health Research and Innovation (FHRI) Fund WACSOSP2023-2024
6 · The paper itself

Abstract

backgroundThe Raine Study, one of the world’s longest-running multigenerational cohort studies, has consistently engaged participants in shaping specific research projects within the Raine Study. While participant involvement has been integral to study operations, there has not previously been an opportunity for participants to actively help shape the overall research agenda. The Participant Priority Setting Project (the Project) was developed to address this gap, providing a structured process to establish participant-led research priorities that will guide future study directions.

methodsThe Project utilised a modified version of the James Lind Alliance (JLA) Priority Setting Partnerships (PSP) Framework to engage Generation 1 (Gen1) and Generation 2 (Gen2) participants in a structured prioritisation process. An online survey was distributed to all active Gen1 and Gen2 participants with an email address on file, to elicit their input on research topics of interest. Responses were analysed and grouped into themes to facilitate discussion. A consensus workshop was then conducted, bringing participants together to refine and rank these themes, ultimately identifying the Top 10 research priorities for the Raine Study.

resultsThe survey received a total of 535 responses (15.11% response rate), presenting 1,225 unique topics. These topics were consolidated into 44 overarching themes, further refined to a final set of 23 themes to take to the consensus workshop. The consensus workshop facilitated participant-driven decision-making amongst its 23 attendees, resulting in a final list of Top 10 research priorities: Mental Health, Health Education and Intervention, Reproductive Health, Cognitive Behaviour, Generational Impact, Neurodivergence, Sex-Specific Health, Environmental Health, Gastrointestinal Health, and the Socioeconomic Effects on Health. In addition to establishing specific priorities, the process highlighted additional themes warranting future exploration.

conclusionThe project demonstrated the feasibility and importance of incorporating participant input into research agenda setting, reinforcing the value of participant involvement at the Raine Study. By integrating participant-informed priorities, the Raine Study strengthens its commitment to meaningful, participant-driven research that reflects the interests and concerns of its cohort. The outcomes of this project will guide future research planning, ensuring alignment with participant-identified priorities.

Indexed as

James lind allianceLongitudinal health researchMultigenerational cohort studyParticipant engagementPriority setting partnershipsResearch agenda settingThe raine study

Identifiers

PMID41267141
PMCPMC12632138

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.