ArticleBMC medical ethics2025
Contribution and legacy: a qualitative study of older people's attitudes about sharing their routinely collected health data for research purposes in New Zealand.
Article in BMC medical ethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
backgroundOlder adults, especially those with dementia, are often excluded from health research due to physical and medical comorbidities, and the assumption that those with cognitive impairment won't be able to consent. Using routinely collected data for research purposes is a way to include older people in research, and therefore the benefits of research. However, very little research has been done to examine the attitudes of older people towards sharing their routinely collected health data for research purposes.
methodTwenty-eight semi-structured interviews were conducted with older health service users in the Counties Manukau health district of Auckland, New Zealand. The interviews explored participants' views around the use of de-identified health data for health service improvement and health services research. Data were analysed using thematic analysis.
resultsThemes identified were: 1) Benefits: participants believed that there were benefits to sharing their health data such as helping others, improving health services, advancing scientific knowledge, and giving back to the health system; sharing health data was also seen as a reflection of good character, and people felt that their pre-existing views about whether they wished to share health data should be respected even if they were no longer able to consent. 2) Concerns: participants had concerns about sharing data with private companies, the use of inaccurate data, and the potential personal and societal consequences of sharing health data. 3) Expectations: participants encouraged collaboration between institutions in New Zealand, but expected data privacy to be maintained, processes to be transparent and cultural values around data to be respected; there was an expectation those sharing health data (patients or institutions) should benefit from any private sector gains.
conclusionOlder people in our study were supportive of sharing their deidentified health data for research purposes provided that the research would benefit others, now and in the future. This provides more confidence in the use routinely collected health data of older people for research, provided that researchers handle data in a respectful way and use it to benefit communities while avoiding potential harms.
trial registrationNA.
Indexed as
Identifiers
What OpenQuestion holds
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.