Removing the ‘one-way mirror’: how to improve public trust in health data sharing
The decision by Baroness Jowell last week to become the first person to donate her medical information to a global cancer database has been hailed as a “gamechanger” by cancer researchers. As concerns around data privacy have reached boiling point, this choice is a prompt reminder of how essential personal data is for high quality healthcare. The novelty of Baroness Jowell’s decision also highlights how cautious the British public are in handing over personal health data. To advance scientific research and improve health outcomes, however, public caution must be overcome.
Concern appears to stem from worries over data privacy and security. This has meant attempts in the past to form large, national databases to facilitate healthcare and advance health science, such as care.data, have been abandoned after public opposition. Indeed, worries are not unfounded. There have been a number of security breaches to NHS systems, including the WannaCry attack last year, where hackers accessed personal data in over 16 health organisations.
Other countries have had more success in obtaining public support to establish large databases. On a recent study visit to Finland, Reform heard about Kanta, a national patient data depository covering all citizens records in private and public healthcare. Kanta also has a citizen’s personal health page, which allows people to examine their own health records. Finland has a key advantage over the UK in that electronic health records for all patients have been in place for several years meaning it has a rich dataset to draw on. In comparison, the nationwide programme for electronic health records in the UK was scrapped in 2011 and many patients still have several paper and electronic records stored in different locations. Finland also has an impressive number of biobanks, with government, academics and industry collaboration making it one of the most advanced countries for genomic research.
During the study visit, officials attributed success in data sharing to high public trust in government, meaning Finns were happy for government to store and use personal data. The Eurostat 2018 poll shows that Finns have the second highest level of trust in their political system in Europe, particularly with social welfare and healthcare organisations. In comparison, the UK comes in at 17th. Dame Calicott, in her 2016 data security review, stressed that presently “trust in the use of personal confidential data in the UK has been eroded in healthcare”.
Although trust in the NHS to manage personal data is low, that does not mean it cannot be gained. Interviewees in Finland emphasised how trust had been established through a clear communication strategy, which explained early on the benefits of data sharing and the security measures that would be in place to protect privacy. The NHS has much to learn from this. The communication strategy for care.data, for example, was heavily criticised. Leaflets were the main communication tool, yet a BBC poll suggested that as many as two thirds of the public had not received it and, those that did, were left with “more questions than answers”. Research led activities informing the public of how their health data is used through social media, such as the #datasaveslives campaign, shows how future communication programmes from government could be far more engaging, informative and wide-reaching.
Finland has also been proactive in updating legislation to support data sharing initiatives and new consent models. The 2013 Finnish biobank law means citizens now have far more oversight; they can see what research projects their samples are used for and can prohibit this at any time. Transparency and choice have been key in sustaining public trust and Finns are happy for their health data to be shared with private companies for the benefit of advancing scientific research, a controversial decision for much of the UK. The consent model in Finland is akin to the emerging idea of dynamic consent. With dynamic consent, instead of applying an ‘all or nothing’ approach, people can change their consent preferences for specific uses over time. This works well for healthcare; people might be happy to share their healthcare data for research but not for the running of the healthcare system. Providing the British public with this amount of choice could do much to improve public trust.
Public control is also key to the successful use of large scale health data. Finns are now able to enter their own data onto the My Kanta pages, – from a mobile health app or Fitbit – choose who can see this data, and use it alongside other data to develop a personalised health plan. Empowering patients to take control of their own data will not only go a long way in driving preventative care but also improve trust by letting people directly benefit in the value of data sharing.
Public support for Tessa Jowell’s decision shows people are happy to share their data for the benefit of advancing scientific research but need to trust that organisations will protect it and use it wisely. International examples like Finland demonstrate how effective communication, proper consent and public involvement can earn public trust. The NHS should learn from these success stories so that patient data can be fully utilised for the benefit of all.