Evidence map›Paper›PMID 40296369›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2025

Consumers' Contribution to Health Research: Australian Research Organisations' Perspectives.

Mingming Zhou, Julia Dray, Anne Parkinson, Alice Richardson, Lucy Clynes, Jane Desborough

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
  2. Consumer Engagement in Chronic Conditions Research: An Integrated Framework Informed by Recognition Theory.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  3. Recognising Consumers' Contributions to Health Research: Co-Designing a Remuneration Framework for the Australian Context.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
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

6 authors.

Mingming ZhouDepartment of Health Economics, Wellbeing and Society, National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australia.ORCID 0000-0003-1839-4979
Julia DrayGraduate School of Health, Faculty of Health, The University of Technology Sydney, Sydney, Australia.
Anne ParkinsonDepartment of Health Economics, Wellbeing and Society, National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australia.ORCID 0000-0001-9053-0707
Alice RichardsonStatistical Support Network, Australian National University, Canberra, Australia.
Lucy ClynesResearch Australia, Canberra, Australia.
Jane DesboroughDepartment of Health Economics, Wellbeing and Society, National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australia.ORCID 0000-0003-1406-4593

Funding

This research was funded the Australian Research Council, Discovery Early Career Researcher Award #DE220100663, The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia.
6 · The paper itself

Abstract

backgroundDespite growing recognition of the importance of consumer engagement in advancing consumer-oriented and relevant research, many researchers experience challenges in appropriately acknowledging consumers' contributions to the research process. A pivotal aspect of this challenge relates to the financial remuneration offered to consumers in recognition of their contributions to research in terms of time, skills and expertise. This may be due to a lack and inconsistency of reported practice and guidance regarding remuneration. We sought to explore current practices for recognising consumers' contribution to health research and to understand health organisations' experiences and perspectives regarding this.

methodsA working group convened by Research Australia comprised of two academics, one PhD candidate and eight health research organisation representatives, including consumer-led organisations, was established to develop a survey to elucidate current consumer remuneration practices in Australia. Drawing on existing consumer engagement literature, the draft survey questions were constructed and finalised following review, discussion and reaching consensus among the working group. The survey was distributed online to 503 research organisation participants across Australia from December 2023 to February 2024. Quantitative data were analysed using descriptive statistics, and qualitative data were analysed using content analysis methods. RESULTS/

findings124 completed surveys were returned (25% response rate). 92% of participants supported recognition of consumer contributions to health research. Of this, 56% provided financial remuneration, while 36% provided non-financial forms of recognition, such as training and acknowledgement of academic outputs. However, recognition methods used in practice differed, and rates of financial remuneration varied across different levels of engagement. The need for national guidelines in consumer remuneration practice was expressed by 93% of participants. IMPLICATIONS/KEY MESSAGE: These survey findings support an imperative to establish national recommendations for consumer remuneration, tailored to the needs of different organisations and contexts in Australia. PATIENT AND PUBLIC CONTRIBUTION: A working group formed with eight member organisations from Research Australia, including consumer-led organisations, contributed to the survey development and interpretation of the qualitative findings by reflecting on the themes developed.

Indexed as

Biomedical ResearchCommunity ParticipationHealth Services ResearchRemunerationAustraliaFemaleHumansMaleSurveys and Questionnairescompensationconsumer engagementconsumer partnershiphealth research organisationreimbursementremuneration

Identifiers

PMID40296369
PMCPMC12037703

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

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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 OpenQuestion graph.