Digital Health Lead, ABHI
Data plays an increasingly important role in all our lives, shaping our online interactions, enabling our travel, leisure and work, but reassurances about its safe use are key.
Never has the need for data been so starkly highlighted as in the response to the pandemic. As the recently published Health Data Strategy highlights “Data was essential to our day-to-day response…Data made all the difference.”
There is much to welcome in the new Strategy, which recognises the huge difference use of data can make to support patients, improve safety, plan health services and develop new treatments and diagnostics. However, understandably people can be protective about sharing their health data and indeed the UK GDPR classifies health data as a ‘special category’ and gives it extra protection. Research by the Health Research Authority has highlighted that these concerns are particularly true when it comes to data, even anonymised data, being shared with commercial entities.
Owners and users of patient data must clearly demonstrate they can be trusted to handle the data in a safe, transparent, agreed and ethical manner.
Reassurances are Key
A robust regulatory and ethical framework must be central to providing the necessary reassurances, and this needs to be a risk-based approach, to ensure it is streamlined and agile to support early access to new innovations for NHS patients.
The ‘Five Safes’ provide a great framework and can be adopted into Trusted Research Environments where industry can test algorithms and platforms without the need to transfer ownership of the data, which can provide reassurance that data is being handled securely.
Communicating the Benefits
There needs to be a concerted communications effort to highlight the rigorous safeguards that are in place, but most importantly the benefits of data to patients, the health system, economic growth and job creation.
Owners and users of patient data must clearly demonstrate they can be trusted to handle the data in a safe, transparent, agreed and ethical manner. This needs a collaborative approach between all the parties involved from policy makers, commissioners, clinicians, academia, industry and crucially, patients.