ArticleCMAJ open
Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.
Article in CMAJ open. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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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.
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Who cites it
10 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
- Exploring the Italian Population's attitudes toward health data sharing for healthcare purpose and scientific research: a cross-sectional study.Journal of public health (Oxford, England) · 2025Article
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
- Article
- Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic.PloS one · 2022Observational
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one.Research involvement and engagement · 2021Review
- A Canadian Prospective Study of Linkage of Randomized Clinical Trial to Cancer and Mortality Registry Data.Current oncology (Toronto, Ont.) · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- "Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore.BMC medical ethics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLittle is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic.
methodsResearchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January and August 2017. The patient partners were engaged as full partners. Recruitment was mainly through the organizations' websites, email and social media. The survey captured respondents' initial perceptions, then (after background information on the topic was provided) elicited their views on the benefits of health research using routinely collected data, data access/privacy concerns, ongoing perceptions and educational needs.
resultsOf the 230 people who consented, 183 (79.6%) started the survey, and 151 (65.6%) completed the survey. Of the 151, 117 (77.5%) were women, 84 (55.6%) were British Columbians, 87 (57.6%) were university graduates, and 101 (66.9%) had a chronic disease. At the beginning of the survey, 119 respondents (78.8%) felt positively about the use of routinely collected data for health research. Respondents identified the ability to study long-term treatment effects and rare events (114 [75.5%]) and large numbers of people (110 [72.8%]) as key benefits. Deidentification of personal information was the top privacy measure (135 [89.4%]), and 101 respondents (66.9%) wanted to learn more about data stewards' granting access to data. On survey completion, more respondents (141 [93.4%]) felt positively about the use of routinely collected data, but only 87 (57.6%) were confident about data security and privacy.
interpretationRespondents generally supported the use of deidentified routinely collected data for health research. Although further investigation is needed with more representative samples, our findings suggest that additional education, especially about access and privacy controls, may enhance public support for research endeavours using these data.
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.