ArticleInternational journal of population data science2019
Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.
Article in International journal of population data science, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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Who cites it
19 citing papers in PubMed.
- Characterising firearm-related databases across Canada: opportunities for data linkage to inform understanding of injury burden and prevention.International journal of population data science · 2025Article
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- Community views on the secondary use of general practice data: Findings from a mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors.International journal of population data science · 2024Article
- Research data use in a digital society: a deliberative public engagement.International journal of population data science · 2024Article
- Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.BMC medical ethics · 2023Article
- Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence.Research involvement and engagement · 2023Article
- Adding epitope compatibility to deceased donor kidney allocation criteria: recommendations from a pan-Canadian online public deliberation.BMC nephrology · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Four questions to guide decision-making for data sharing and integration.International journal of population data science · 2023Article
- Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.International journal of population data science · 2023Article
- Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.International journal of population data science · 2023Article
- Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.JMIR cancer · 2022Article
- Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.JMIR human factors · 2022Article
- Sharing administrative health data with private industry: A report on two citizens' juries.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Conditionally positive: a qualitative study of public perceptions about using health data for artificial intelligence research.BMJ open · 2020Article
- A framework for centering racial equity throughout the administrative data life cycle.International journal of population data science · 2020Article
- Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.International journal of population data science · 2020Article
- Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data.International journal of population data science · 2019Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). OBJECTIVES AND
methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends.
resultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.
conclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the 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.