Patients’ views and attitudes towards the sharing of health data for research
| Overall willingness to share data | Motivations to share data | Perceived benefits of data sharing | Perceived risks of data sharing | Barriers to share data | Factors affecting willingness to share data | Conditions 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 |