dc.contributor.author |
Dobson, Rosie |
|
dc.contributor.author |
Wihongi, Helen |
|
dc.contributor.author |
Whittaker, Robyn |
|
dc.coverage.spatial |
England |
|
dc.date.accessioned |
2023-10-03T23:16:38Z |
|
dc.date.available |
2023-10-03T23:16:38Z |
|
dc.date.issued |
2023-04 |
|
dc.identifier.citation |
(2023). BMC Medical Informatics and Decision Making, 23(1), 66-. |
|
dc.identifier.issn |
1472-6947 |
|
dc.identifier.uri |
https://hdl.handle.net/2292/66090 |
|
dc.description.abstract |
Background: The increased digitalisation of health records has resulted in increased opportunities for the secondary use of health information for advancing healthcare. Understanding how patients want their health information used is vital to ensure health services use it in an appropriate and patient-informed manner. The aim of this study was to explore patient perceptions of the use of their health information beyond their immediate care. Methods: Semi-structured in-depth interviews were conducted with current users of health services in Aotearoa New Zealand. Different scenarios formed the basis of the discussions in the interviews covering different types of information use (current practice, artificial intelligence and machine learning, clinical calculators, research, registries, and public health surveillance). Transcripts were analysed using thematic analysis. Results: Twelve interviews were conducted with individual's representative of key ethnicity groups and rural/urban populations, and at the time of recruitment, had been accessing a diverse range of health services. Participants ranged from high users of health care (e.g., weekly dialysis) through to low users (e.g., one-off presentation to the emergency department). Four interrelated overarching themes were identified from the transcripts describing the main issues for participants: helping others, sharing of data is important, trust, and respect. Conclusions: People currently engaging with health services are supportive of their health information being used to help others, advance science, and contribute to the greater good but their support is conditional. People need to be able to trust the health service to protect, care for, and respect their health information and ensure no harm comes from its use. This study has identified key considerations for services and researchers to reflect on when using patient health information for secondary purposes to ensure they use it in a patient-informed way. Trial registration: NA. |
|
dc.format.medium |
Electronic |
|
dc.language |
eng |
|
dc.publisher |
Springer Nature |
|
dc.relation.ispartofseries |
BMC medical informatics and decision making |
|
dc.rights |
Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. |
|
dc.rights.uri |
https://researchspace.auckland.ac.nz/docs/uoa-docs/rights.htm |
|
dc.rights.uri |
http://creativecommons.org/licenses/by/4.0/ |
|
dc.subject |
Humans |
|
dc.subject |
Qualitative Research |
|
dc.subject |
Artificial Intelligence |
|
dc.subject |
Delivery of Health Care |
|
dc.subject |
New Zealand |
|
dc.subject |
Health Records, Personal |
|
dc.subject |
Consumer perspectives |
|
dc.subject |
Data sharing |
|
dc.subject |
Health information |
|
dc.subject |
4203 Health Services and Systems |
|
dc.subject |
42 Health Sciences |
|
dc.subject |
Clinical Research |
|
dc.subject |
Health Services |
|
dc.subject |
7 Management of diseases and conditions |
|
dc.subject |
8 Health and social care services research |
|
dc.subject |
8.1 Organisation and delivery of services |
|
dc.subject |
7.1 Individual care needs |
|
dc.subject |
8.3 Policy, ethics, and research governance |
|
dc.subject |
Generic health relevance |
|
dc.subject |
3 Good Health and Well Being |
|
dc.subject |
Science & Technology |
|
dc.subject |
Life Sciences & Biomedicine |
|
dc.subject |
Medical Informatics |
|
dc.subject |
PRIVACY |
|
dc.subject |
CONSENT |
|
dc.subject |
PREFERENCES |
|
dc.subject |
ACCESS |
|
dc.subject |
TRUST |
|
dc.subject |
0806 Information Systems |
|
dc.subject |
1103 Clinical Sciences |
|
dc.title |
Exploring patient perspectives on the secondary use of their personal health information: an interview study |
|
dc.type |
Journal Article |
|
dc.identifier.doi |
10.1186/s12911-023-02143-1 |
|
pubs.issue |
1 |
|
pubs.begin-page |
66 |
|
pubs.volume |
23 |
|
dc.date.updated |
2023-09-17T22:56:55Z |
|
dc.rights.holder |
Copyright: The authors |
en |
dc.identifier.pmid |
37041588 (pubmed) |
|
pubs.author-url |
https://www.ncbi.nlm.nih.gov/pubmed/37041588 |
|
pubs.publication-status |
Published |
|
dc.rights.accessrights |
http://purl.org/eprint/accessRights/OpenAccess |
en |
pubs.subtype |
Research Support, Non-U.S. Gov't |
|
pubs.subtype |
research-article |
|
pubs.subtype |
Journal Article |
|
pubs.elements-id |
958310 |
|
pubs.org-id |
Medical and Health Sciences |
|
pubs.org-id |
Population Health |
|
pubs.org-id |
Epidemiology & Biostatistics |
|
pubs.org-id |
Pacific Health |
|
dc.identifier.eissn |
1472-6947 |
|
dc.identifier.pii |
10.1186/s12911-023-02143-1 |
|
pubs.number |
66 |
|
pubs.record-created-at-source-date |
2023-09-18 |
|
pubs.online-publication-date |
2023-04-11 |
|