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30 March 2020updated 09 Sep 2021 3:32pm

A new social contract for health data

Data stewards must be responsible to the public. 

By Dr Saira Ghafur

The world is facing unprecedented challenges as coronavirus takes hold globally. The virus is expected to continue to spread for months to come. There is an urgent need for public bodies and healthcare professionals to share information rapidly and communicate directly with the public and patients. Researchers from locations across the world have been able to share data to help epidemiological modelling, vaccine development and evidencebased clinical care.

In the past two decades, there have been a number of global pandemics, including Sars and the avian flu (H5N1). Successful control and containment of any pandemic needs rapid data collection, analysis, modelling and timely reporting. This allows governments to make crucial decisions, implement containment measures and ultimately save lives.

Polling shows that the public is widely supportive of sharing data, particularly to improve clinical care. To ensure that data sharing is as seamless as possible, privacy laws such as the General Data Protection Regulation, which came into force in 2018, contain exemptions to allow for it to be shared for the benefits of public health. Since the outbreak of this pandemic, this has been supported by the Health Secretary and the Information Commissioner’s Office.

However, data sharing in such extreme situations and with the involvement of commercial companies remains an area in which privacy concerns are growing. Advances in technology have resulted in digitised health systems with capabilities to generate more high-quality data.

The NHS is one of the most trusted institutions in the UK; the Open Data Institute has reported that 64 per cent of consumers trust the NHS with their personal data. Any lack of transparency concerning data sharing fuels suspicion and erodes public trust. Some have called for a new “social contract” for data in healthcare that sets out the obligations of any data stewards within a given health system and their responsibilities to the public. This needs to be achieved with public consent. Going too far risks creating significant backlash and loss of trust later.

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Several factors need to be considered in this social contract. Citizens must be involved in decisions regarding the use of health data; this should be done on an ongoing basis and should include all segments of the UK population. Any use of NHS data through partnerships between the health service and third parties must improve health and care for all. This needs to be prioritised over any financial return. Arrangements entered into by NHS organisations must agree fair terms for their organisation and for the NHS as a whole. Further, any arrangements agreed by NHS organisations must fully adhere to all applicable legal, regulatory, privacy and security obligations.

To support this, there must be a significant investment from government to improve data quality and infrastructure alongside a clear business case for the investment. This should include reassurances that, if the money is invested, the NHS can deliver. There should also be a role for businesses, particularly tech companies, that have critical capabilities in data science. However, their role needs to be defined within a framework that the public is comfortable with. There needs to be a way for taxpayers to share in the value generated by their investment.

Data sharing, with the right checks and balances, has the potential to save lives. This current pandemic has demonstrated the benefits of data sharing to permit a data-driven global response. Governments and data stewards now have the responsibility of demonstrating their trustworthiness with people’s information, and ensuring that this is extended in more routine circumstances.

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Dr Saira Ghafur, Gianluca Fontana and Lord James O’Shaughnessy are part of the Institute of Global Health Innovation at Imperial College London