Evidence map›Paper›PMID 41190237›Full record

ArticleInternational journal of population data science2025

Placing conditions on sharing general practice data for research: Recommendations from two community juries.

Annette Joy Braunack-Mayer, Heidi Green, Lucy Carolan, Belinda Fabrianesi, Carolan Adams, Felicity Flack, Anthony Brown, Kate Miller, Carrie Hayter, Joel Rhee and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in International journal of population data science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

13 authors.

Annette Joy Braunack-MayerAustralian Centre for Health Engagement, Evidence and Values, University of Wollongong, NSW, Australia.
Heidi GreenAustralian Centre for Health Engagement, Evidence and Values, University of Wollongong, NSW, Australia.
Lucy CarolanAustralian Centre for Health Engagement, Evidence and Values, University of Wollongong, NSW, Australia.
Belinda FabrianesiAustralian Centre for Health Engagement, Evidence and Values, University of Wollongong, NSW, Australia.
Carolan AdamsMacquarie University, NSW, Australia.
Felicity FlackPopulation Health Research Network, University of Western Australia, WA, Australia.
Anthony BrownHealth Consumer NSW, NSW, Australia.
Kate MillerPopulation Health Research Network, University of Western Australia, WA, Australia.
Carrie HayterHealth Consumer NSW, NSW, Australia.
Joel RheeUniversity of NSW, NSW, Australia.
Alberto Nettel-AguirreNational Institute for Applied Statistics Research Australia, University of Wollongong, NSW, Australia.
Justin BielbyTorrens University, Adelaide, SA, Australia.
Matthew Wright-SimonEngage Change, South Adelaide, SA, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: There is increasing demand for access to general practice health records for secondary purposes, including research. However, the extent to which the public supports such use is unclear. We sought to explore informed Australians' perspectives on conditions under which the use of general practice data for research would be acceptable. Methods: We conducted two community juries in July and August 2023 with 20 participants, selected for diversity, in each jury. Jurors worked for 36 hours, in a combination of online and face-to-face sessions, over 6 days. They listened to expert presentations, discussed, and challenged experts, deliberated, and developed their own recommendations. Results: Both juries, in principle, supported sharing general practice data for research purposes. They made 24 (Sydney jury) and 19 (Melbourne jury) recommendations related to consent, information provision, public benefit, data security, governance and costs. Conclusions: The outcomes of the deliberative process suggest that an informed group of Australian citizens are willing to share general practice data for research provided strict conditions are met. Implications for Public Health: Adopting the recommendations from the juries will require a range of policy and regulatory responses including legislative changes.

Indexed as

General PracticeInformation DisseminationAdultAustraliaComputer SecurityFemaleHumansInformed ConsentMaleMiddle Agedcommunity juryconsentdata linkagedeliberationgeneral practicegeneral practice dataprivacy

Identifiers

PMID41190237
PMCPMC12581136

What OpenQuestion 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 OpenQuestion graph.