Table 3

Public views and attitudes towards the sharing of health data for research

Overall willingness to shareMotivations to sharePerceived benefits of data sharingPerceived risks of data sharingBarriers to share dataFactors affecting willingness to share dataConditions for sharing
78.8% felt positively about the use of routinely collected data for health research24 Altruistic reasons and contributing to the greater good25 ‘Discussants recognised the benefits of data-sharing’29 42.4% lacked confidence in data security and privacy24 Data sharing with private companies25 Findings suggested that males and older people were more likely to consent to a review of their medical data (systematic review)27 De-identification of personal information as a top privacy measure (89.4%)24
Widespread willingness to share patient data for research12 Sharing for the common good12 Finding new treatments and improving diagnosis25 51% would worry about their privacy31 Respondents were strongly averse to health insurance companies, private sector pharmaceutical companies and academic researchers viewing their data23 Generational differences impacted willingness25 Consent procedures should be audited and an ombudsman should oversee the governance of the use of personal care information for research26
The majority of participants were in favour of placing genetic data to research’s disposal25 No expectation of an immediate impact or beneficial return but ultimately wanting to help the next generation25 Respondents agreed that storage was important for improving treatment quality (75.5%), preventing epidemics (63.9%) and reducing delays (58.9%)23 Concerns about privacy and confidentially13 29 Willingness to participate was associated with self-identified white race31 Acceptance of alternative consent models conditional on a number of factors, including: security and confidentiality, no inappropriate commercialisation or detrimental use, transparency, independent overview, the ability to object to any processing considered to be inappropriate or particularly sensitive37
66% stated they would be willing to participate in a biobank31 Ability to study long-term treatment effects and rare events (75.5%)24 Concerns about a party's competence in keeping data secure12 25 26 Willingness to participate was associated with higher educational attainment31 Important to inform research participants of a study's data-sharing plans during the informed consent process29
Respondents recognised the benefits of storing electronic health information23 Ability to study large numbers of people (72.8%)24 Concerns about different levels of access by third parties were expressed by 48.9%–60.6%23 Willingness to participate was associated with lower religiosity31 NICE should hold open days and provide information resources designed to ensure people understand what data are being used for, precisely how it will be used and providing reassurance that personal care data will not be passed on or sold to other organisations26
Widespread general—though conditional—support for data linkage and data sharing for research purposes13 Concerns about potential for data to be sold on to other organisations and used for profit and for purposes other than research26 Willingness to participate was associated with perceiving more research benefits, fewer concerns and fewer information needs31 Information provision to participants about identified biobank objectives, governance structure and accountability33
Just over 50% of the members of the Council said they would have no concerns about NICE using anonymised data derived from personal care records26 Concerns about data sharing for commercial gain and the potential misuse of information (focus groups)27 Willingness increased if there was perceived actual or potential public benefits from the research13 Appropriate systems and good working practices should be put in place to ensure a consistent approach to research planning, data capture and analysis26
Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions33 Concerns about potential misuse by insurers, the government and other third parties33 Willingness increased if there was trust in the individuals or organisations conducting and/or overseeing data linkage/sharing13 Most (86%) participants would want to know what would happen if a researcher misused their health information31
Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers33 Misuse and abuse of data13 25 and potential harms arising13 Sharing due to financial incentives impacted willingness25
People are typically willing to accept models of consent other than that which they would prefer37 Concerns relating to individuals’ control over their data13 Differences between sharing genetic data or health data impacted willingness25
All participants were keen to contribute to NHS-related research (focus groups)27 Concerns about control and ownership of biological samples and data33 Sharing data with private companies impacted willingness25
Concerns centred on transparency about how data are used and how it might be used in the future26 Participants became more accepting of the use of precollected medical data without consent after being given information about selection bias and research processes (focus groups)27
Concerns about ensuring research is conducted according to good scientific practice and data are used to benefit society26 66.9% wanted to learn more about data stewards granting access to data24
Fear of becoming a transparent citizen25 Discussants were significantly more likely to participate in a study that planned to deposit data in a restricted access online database compared with an open access database29
  • NHS, National Healthcare Service; NICE, National Institute for Health and Care Excellence.