ArticleBMC medical informatics and decision making2023
Exploring patient perspectives on the secondary use of their personal health information: an interview study.
Article in BMC medical informatics and decision making, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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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.
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.
Who cites it
6 citing papers in PubMed.
- Contribution and legacy: a qualitative study of older people's attitudes about sharing their routinely collected health data for research purposes in New Zealand.BMC medical ethics · 2025Article
- I don't mind my information going to the Moon, but I don't want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland.Archives of public health = Archives belges de sante publique · 2025Article
- Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.BMJ health & care informatics · 2025Article
- Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders.Applied clinical informatics · 2025Article
- An example of governance for AI in health services from Aotearoa New Zealand.NPJ digital medicine · 2023Article
- Enhancing public health research: a viewpoint report on the transition to secure, cloud-based systems.Frontiers in public health · 2023Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsSemi-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.
resultsTwelve 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.
conclusionsPeople 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.
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Registered trials
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.