Evidence map›Paper›PMID 39695423›Full record

ArticleBMC psychiatry2024

Collection and sharing of health information in mental health and related systems in Australia: perspectives of people who access mental health services.

Anne Honey, Nicola Hancock, Helen Glover, Justin Newton Scanlan, Yidan Cao, Andrew Povolny, Mark Orr, Grenville Rose, Sumathi Govindasamy, Lorraine Smith and 1 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC psychiatry, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Review
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

11 authors.

Anne HoneyFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Nicola HancockFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia. nicola.hancock@sydney.edu.au.
Helen GloverEnlightened Consultants, PO Box 7361, Redland Bay, QLD, 4165, Australia.
Justin Newton ScanlanFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Yidan CaoFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Andrew PovolnyFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Mark OrrFlourish Australia, Level 3, Quad 3, 102 Bennelong Parkway, Sydney Olympic Park, NSW, 2127, Australia.
Grenville RoseFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Sumathi GovindasamyFlourish Australia, Level 3, Quad 3, 102 Bennelong Parkway, Sydney Olympic Park, NSW, 2127, Australia.
Lorraine SmithFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Naseem AhmadapourFaculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.

Funding

NHMRC 2021 MRFF Consumer-Led Research 2022597
6 · The paper itself

Abstract

backgroundInformation sharing and information privacy are important issues in mental health services. Yet the perspectives of Australians who access mental health services about these issues are poorly understood. This article addresses the research question: What are the concerns of people who use mental health services about the collection and use of their health information in mental health and related systems in Australia?

methodsParticipants were 16 people who had accessed mental health services and were involved in a series of co-design workshops as part of a larger study. Focused group activities were conducted in which participants were asked to discuss and create a visual map to describe their collective experiences of sharing information relating to mental health and recovery. The data were analysed using qualitative content analysis and the coding techniques of constant comparative analysis.

resultsParticipants expressed a sense of unknowability about the information held and accessed by various organisations. They described providing information to a wide variety of entities, though not always in a free or informed way. They believed other information held about them had been generated and/or shared by people other than themselves, often without their knowledge or consent. Participants reported that both the collection and storage of this information involved risks for them, and they sometimes restricted the information they provided. To improve their comfort with the use of their information, participants recommended customised and transparent information collection; individuals' access and input to their own information; and use of information only for their benefit.

conclusionsTrust is key to positive experiences of information provision and information sharing. Central to establishing trust are transparent practices that facilitate greater choice and control.

Indexed as

Information DisseminationMental Health ServicesAdultAustraliaConfidentialityFemaleFocus GroupsHealth Services AccessibilityHumansMaleMiddle Aged

Identifiers

PMID39695423
PMCPMC11656865

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.