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 research24Altruistic reasons and contributing to the greater good25‘Discussants recognised the benefits of data-sharing’2942.4% lacked confidence in data security and privacy24Data sharing with private companies25Findings suggested that males and older people were more likely to consent to a review of their medical data (systematic review)27De-identification of personal information as a top privacy measure (89.4%)24
Widespread willingness to share patient data for research12Sharing for the common good12Finding new treatments and improving diagnosis2551% would worry about their privacy31Respondents were strongly averse to health insurance companies, private sector pharmaceutical companies and academic researchers viewing their data23Generational differences impacted willingness25Consent 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 disposal25No expectation of an immediate impact or beneficial return but ultimately wanting to help the next generation25Respondents agreed that storage was important for improving treatment quality (75.5%), preventing epidemics (63.9%) and reducing delays (58.9%)23Concerns about privacy and confidentially13 29Willingness to participate was associated with self-identified white race31Acceptance 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 biobank31Ability to study long-term treatment effects and rare events (75.5%)24Concerns about a party's competence in keeping data secure12 25 26Willingness to participate was associated with higher educational attainment31Important to inform research participants of a study's data-sharing plans during the informed consent process29
Respondents recognised the benefits of storing electronic health information23Ability to study large numbers of people (72.8%)24Concerns about different levels of access by third parties were expressed by 48.9%–60.6%23Willingness to participate was associated with lower religiosity31NICE 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 purposes13Concerns about potential for data to be sold on to other organisations and used for profit and for purposes other than research26Willingness to participate was associated with perceiving more research benefits, fewer concerns and fewer information needs31Information 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 records26Concerns about data sharing for commercial gain and the potential misuse of information (focus groups)27Willingness increased if there was perceived actual or potential public benefits from the research13Appropriate 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 institutions33Concerns about potential misuse by insurers, the government and other third parties33Willingness increased if there was trust in the individuals or organisations conducting and/or overseeing data linkage/sharing13Most (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 researchers33Misuse and abuse of data13 25 and potential harms arising13Sharing due to financial incentives impacted willingness25
People are typically willing to accept models of consent other than that which they would prefer37Concerns relating to individuals’ control over their data13Differences between sharing genetic data or health data impacted willingness25
All participants were keen to contribute to NHS-related research (focus groups)27Concerns about control and ownership of biological samples and data33Sharing data with private companies impacted willingness25
Concerns centred on transparency about how data are used and how it might be used in the future26Participants 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 society2666.9% wanted to learn more about data stewards granting access to data24
Fear of becoming a transparent citizen25Discussants 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.