Table 2

Patients’ views and attitudes towards the sharing of health data for research

Overall willingness to share dataMotivations to share dataPerceived benefits of data sharingPerceived risks of data sharingBarriers to share dataFactors affecting willingness to share dataConditions for sharing
Strong willingness to give broad consent for secondary data use (93%)16 98% considered that the altruistic benefits of sharing healthcare data outweighed the risks14 ‘Helping my doctor make better decisions about my health’ (94%)28 Concerns that data could not truly be deidentified32 If data sharing is motivated by financial gain or profit20 Significant association between country and attitudes towards data sharing34 Protection of privacy34
Strong approval of abolishing patient consent (76%)16 Helping future patients (67%)16 Improving patient care and advancing understanding of treatment risks and side effects20 Data security risks16 18 20 If an entity might profit by selling their data20 Significant association between age and data sharing17 Studies that offer value and minimise security risks20
93% of respondents were willing to share data17 Returning own benefits from research (72%)16 Increased chance of receiving personal health information21 Concerns about misuse of data18 Lack of transparency and awareness around the use of data, making it difficult to secure public trust22 No clear relationship was found between data sharing and the number of years diagnosed, sex, medication class or health confidence17 Researchers protect patients’ privacy and information21
Stakeholders were open to data sharing in multicentre studies20 Improving health outcomes or care20 Health data being ‘stolen by hackers’ (87%)28 Expressions of trust and attitudes to risk are often affected by the nature of the rare disease a patient has, as well as regulatory and cultural practices in their home country18 20% found that participants and their de-identified data may remain linked to allow for return of individual health results and to support further research21
Most participants expressed a desire that their data should be available for as many research studies as possible21 Answering important research questions20 Detrimental consequences of data falling into the wrong hands, such as insurance companies22 Perceptions of the benefits and value of research increased willingness20 No consensus among patients on ownership of, access to and usage of their research data17
Patients were supportive of sharing their anonymised electronic patient record for research22 Great hope and trust in the development of this type of research19 Perceived possibility that open knowledge could lead to discrimination as having a rare disease was recognised as an inherent vulnerability18 Electronic interface system as a means of enabling feedback regarding data recipients and associated research results increased willingness22 Need for information and transparency on database governance19
Participants positively disposed towards research and towards allowing data and biosamples to be shared internationally18 Support of research in general (86%)16 Willingness increased if social security number (90%) and insurance ID (82%) were removed from the data for linkage and research use28 Transparency in conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry19
Patients were strongly in favour of sharing data in the context of compiling a European leukodystrophies database19 Privacy-protecting methods that share summary-level data (though concerns about increased cost and loss of validity) increased willingness20 Use of an electronic interface to enable greater control over consent choices22
Having control over what data are shared and with whom increased willingness 34 Wanting to know who does research (34%)16
Willingness increased if patients were able to learn how their data was protected (84%)28 Wanting to know type of research (37%)16
Patients need access to research results19
Need for public campaigns to inform stakeholders about Big Data32
Central role of clinicians in introducing patients to research32