Data strategies must be designed around patient input, report finds

Patients must be included in the development of strategies designed to gain benefit from NHS data, according to a new report.

The report, NHS Data: Maximising its impact on the health and wealth of the United Kingdom, states benefits to patients and the NHS must be at the heart of any innovation underpinned by the UK’s extensive healthcare data, outlining three key principles to achieve this.

Patients must feel a sense of agency and control over what happens to their data; health data must always be used in a way that is safe, secure, legal and ethical; and there must be a concerted effort to fairly distribute benefits to people across the UK, the authors concluded.

“Get it right, and we can generate enormous value for patients, clinicians, taxpayers and the economy,” it read.

“Get it wrong, and the public will withdraw their support. By following our proposals, the NHS can remain the most trusted institution in the UK while maximising the extraordinary potential of its data assets.”

The report, authored by Lord Ara Darzi, co-director of the Institute of Global Health Innovation at Imperial College London and Lord James O’Shaughnessy, visiting professor at the institute, aims to provide a single overarching framework to guide proper use of the UK’s health data assets.

The UK still faces “significant challenges” surrounding patient data, they said.

Electronic health records, while useful in clinical practice, provide largely unstructured data that is difficult to link to other care settings; data quality needs to improve dramatically; and the NHS currently lacks the capacity to curate data at scale, the report outlined.

There is a lack of investment to alleviate these challenges and a lack of clarity over which organisation would be responsible for developing the UKs strategy on health data, it adds.

“This needs to be addressed urgently. A single organisation should be accountable for developing and delivering a vision, co-produced with the public and with key stakeholders in the system,” it states.

“Investment is required to attract and retain talent, provide education and training, upgrade data infrastructure, and improve data quality.”

The investment would be paid back by enabling the acceleration of progress in medicine and improving the population’s health and care, potentially generating billions for the UK economy.

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Key recommendations in the report include:

• Urgent need for the Information Commissioner’s Office to issue guidance about best practice on data sharing in the NHS
• Establishing clear rules for data access by research organisations and the private sector, following a transparent public debate
• Developing policies, tools and partnerships to mine the data in areas likely to deliver the most benefit for patients and the NHS
• Recruiting and funding talented data scientists and engineers
• Establishing government-funded initiatives to improve data quality

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Lord Darzi and Lord O’Shaughnessy highlighted six areas of action to maximise the impact of NHS data: public opinion and engagement; data governance and legal frameworks; data quality and infrastructure; capabilities; investment; and value sharing.

“Maximising the potential of the UK’s health data can deliver major benefits for patients and taxpayers, but achieving this requires a comprehensive strategy rather than piecemeal actions,” Lord Darzi said.

“Most urgently, the Government needs to get patients involved in designing their strategy. While the NHS is highly trusted when it comes to protecting personal data, some recent examples of public-private data-sharing risk eroding that trust.

“Establishing a better understanding of what the public will and won’t accept – and giving them more control over the process – is long overdue.”