Key messages

The planned launch of the General Practice Data for Planning and Research (GPDPR) programme has been deferred due to public concern. The concerns have arisen in spite of an arguably well-established legal and regulatory framework for sharing healthcare data, linking European regulation, UK law and the NHS Constitution.

To aid efforts to understand public attitudes to healthcare data sharing, we asked, “What are the barriers and enablers for patients and the public participating in sharing personal healthcare data?” From a wide-ranging search of patient experience and engagement literature, we identified the following barriers and enablers:

Public understanding

In general, public understanding is poor – Ipsos Mori, for example, have made the point that: “When it comes to patient awareness and understanding of health data in the UK, the public… often knew little about some key areas”. Such findings are not new – in 2014, local Healthwatch, commenting on public reactions to the Care.data initiative, said: “The debate showed that public awareness of the ‘pros and cons’ of the scheme is limited”.

There is a legal angle on this: “The law requires ‘fair processing’ – patients must be informed of the uses of their data but sometimes they are not” ² .

Equally important is the commercial angle: “One of the things that worries members of the public is what use their data might be put to that involves making a profit for somebody other than the health service” ³.

Ethical considerations are also in play: “… there was generally found to be low public awareness of current research practices and in particular, of current governance or ethics processes” ⁴.

Finally, there are technical issues: “The way that personally identifiable data could be translated into depersonalised and aggregate data was not understood… Some struggled to understand how aggregated datasets could give any useful learning about individuals” ⁵ .

Public engagement

To facilitate data sharing, there is a clear need for education and dialogue. However, past experience has revealed some barriers – for example, poor planning. At the time of Care.Data, one local Healthwatch reported that “Unfortunately the pathfinder programme has been hampered by delays and lack of materials [which] have led to real difficulty for us locally as we have had to change engagement plans, cancel public meetings and contact groups and stakeholders to change information that we originally gave them” ⁶.

Inappropriate language can also get in the way: “The current language landscape around the use of patient data in care, treatment and research is difficult, complex and confusing….This acts as a significant barrier to having open discussions with the public about the use of data in ways that can build both understanding and trust” ⁷.

Public engagement nowadays needs to take account of the influence of misinformation. For example, a study looking at why people chose to not use the NHS COVID-19 app found that “Reasons included: – the (false) perception that the NHS COVID-19 app was run by a distrusted private company (Serco) rather than by the NHS”.

It should perhaps go without saying that public engagement should be inclusive. Healthwatch England have made a useful point about public engagement and carers: “Carers are often ‘forgotten’ because they are caring for someone and have also neglected the need to ‘opt-out’ if necessary”.

Choice and control

It may come as no surprise that “Perceived autonomy, or individual control over how data is used, was found to be a key factor shaping public responses” ⁸.

A key driver for concerns over choice and control is the question of data privacy. This has been recognised by the Department for Health and Social Care: “The primary reason for not downloading the NHS COVID-19 app were concerns around privacy and not wanting to use the app”.

Third parties' motives for wanting access to personal healthcare data is a further cause for concern. A Healthwatch survey on sharing of medical records found that “The most common area of concern with respect to record sharing was access by third parties”. Commercial companies are a common focus of anxieties about third party use of personal healthcare data: “The fear of data being misused by companies for their own gain was very apparent in all groups” ⁹.

Questions of data security can also affect people’s perceptions of how much control they have over their own data: “85% of people in one survey knew about the Wannacry hacking scandal and 53% said their confidence in the ability of the NHS to handle data was negatively affected” ¹⁰.

Concerns over choice and control could perhaps be mitigated by effective regulation. But that might depend on the extent to which regulation is seen as keeping pace with technological developments: “five public bodies were responsible for assessing the impact and safety of Babylon’s products (CQC, MHRA, NHS Digital, NHS England, and Hammersmith and Fulham CCG), demonstrating the lack of clarity that currently exists in the oversight of technology products such as chatbots” ¹¹.

Demographic differences

There may be some differences between women and men in attitudes towards data sharing: An Ipsos Mori study asked 2,000 people how important it was that the NHS treats a patient’s medical records as confidential, and found that “Women are more likely than men to say this is very important (89% vs 85%)”.

There might also be some age differences in data sharing acceptance. However, conclusions regarding age or gender variations are not unanimous: “Older people were generally more willing to have their records shared between the professionals involved in their care. In focus groups with over 65s there were comments from older people about the difficulty of remembering all the relevant details of their health history” ¹². Conversely, “16-24 year olds were significantly more likely than older age groups to be confident that their data would be handled securely” ¹³.

A third factor that also appears to be influential is social status: “ABC1s were more likely than C2DEs to view the use of health data as having a potential benefit to society, in the fields of research, disease prevention, planning of services, crime prevention and so on”. For C2DEs, “Any linking resulting in the individual being targeted with specific messages prompts discomfort and resistance. The expectation is that blame and desired behaviour change will be implicit” ¹⁴.

Trust

A key enabler for patient and public attitudes towards data sharing is trustworthiness: “The overwhelming factor in considering whether or not to share data… is whether or not people trust the organisation asking for it” ¹⁵. However, trust is not distributed equally. Ipsos Mori has found that “Public sector healthcare providers are most trusted to use personal information” in comparison to other organisations such as insurance companies and social media.

Trust is also not given unconditionally – there are caveats: “If the parameters of medical and care record sharing are kept within the confines of the medical and care professions, and there are procedures in place to ensure security, confidentiality and accuracy, there is strong support” ¹⁶.

Social and political context also matters: “when discussing trust, many members of the public veered away from specific technologies and instead spoke about the social and political systems in which they are deployed” ¹⁷.

Public benefit

People are likely to support health data sharing if the reason for doing so offers clear public benefit: “The vast majority of respondents reported that if their health information could help others (e.g. via research) they would be happy to share it” ¹⁸.

The benefit may not have to be specific. People are willing to accept “potential” benefits, and to respond to broader ideas such as “altruism”. “Assurances that research would – or at least have the potential to – bring about public benefits were fundamental for ensuring public support or acceptance” ¹⁹. “Participants [were] willing to share electronic health records (EHRs) for secondary purposes when there was a 'common', 'greater' or 'public good', and when there was 'social responsibility', 'altruistic attitudes' and 'giving something back'" ²⁰.

One study, however, takes a different view: “Being clear about specific secondary uses, and providing examples that are tangible and meaningful to the wider public, is likely to gain more support than presenting it in a more abstract or generic way” ²¹.

It may, however, be important to emphasise that the ultimate public benefit is improved patient care: “Improved patient care has to be the main purpose for entering into data access partnerships in the eyes of Jurors…That should be the endgame” ²².

The other side of the “optimism” coin is the opportunity cost of not sharing healthcare data: “Jurors reflected on the cost of not using the data for access partnerships…They saw this, together with NHS organisations not being in tune with the fast-moving world of digital and technological innovation as serious challenges to success” ²³.

The “public benefit” case could also be important for commercial access to health data: “Participants wanted companies accessing health data to demonstrate that they are making a contribution to public value and a real, long term benefit to health in the UK” ²⁴.

Information

Learning acquired from the Care.data scheme suggested that better quality information could have enabled public engagement and understanding. This includes methods of communication: “There does need to be more effort to inform people of the programme in addition to the letter to each patient of the GP surgery” ²⁵, as well as the content of communications: “A more informative public awareness campaign - which better covers areas such as… ethics, data security and safeguards - would help to build trust” ²⁶.

Information on data sharing should be part of a more general process: “patients and the public [should be] active partners in agreeing priorities for, and determining the acceptability of, data-driven technologies as part of an ongoing process” ²⁷.

Information also needs to be clear about all sides of the data-sharing debate: “No use of technology is without risk… Public trust cannot be engendered if only benefits are highlighted” ²⁸, and there is a need to reassure patients and public that risk is well managed: “Patients need to feel confident that their data is secure and in the hands of trusted actors” ²⁹.

Relationships

Various studies suggest that the patient/professional relationship may be an important enabler for healthcare data sharing.

One possibility is that “the greater general level of trust in healthcare providers compared to other public bodies may be due to individuals’ existing relationships with primary healthcare providers, which are in some cases built up over many years, suggesting that having a familiar relationship with an individual is important for securing trust” ³⁰.

This might play into the shared decision-making agenda: “The majority of people (77%) felt that it should be a combination of patient and professional who decide how records are shared. (Patient and doctor together, 42%, or patient, doctor and social care practitioner, 35%)” ³¹.

Relationships at the organisational level may also be important: “The NHS should engage key stakeholders on a regular basis to determine which datasets have the highest priority for them; what new datasets should be released as open data; and which open data collections are particularly easy or difficult to use” ³².