The government must ensure transparency on how health data will be used and the rights and options people have, according to the Health Foundation. It says this is only way to build trust and show people how their data can improve the NHS and save lives.

The warning comes as the draft strategy ‘Data saves lives: reshaping health and social care with data’ was published by NHSX with the aim of supporting delivery of patient-centred care.

Under the proposals, patients will able to access their test results, medication lists, procedures and care plans from across all parts of the health system through patient apps, such as the NHS App, by ensuring data is shared safely and more effectively across the system.

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The Department of Health says by improving their access to data, people will also be able to manage appointments, refill medications and speak with health and care staff when needed.

In addition, the strategy proposes better use of personal data to analyse key trends in the health of the nation, which could improve the commissioning and planning of services for local communities and allow better preparation to identify, prepare for and respond to future diseases.

Data can help NHS tackle the backlog of care

Adam Steventon, Director of Data Analytics at the Health Foundation, said: ‘We very much welcome the data strategy. Health data has played a critical role in the last year – from tracking Covid-19 outbreaks and developing treatments, to getting people booked in for their vaccines.

"It is critical that the use of data is accelerated if the NHS is to tackle the backlog of care and address the massive health challenges facing the country. It is particularly positive that the government has committed to building analytical and data science capability in the NHS and to improving data on social care."

The British Medical Association also said that when used effectively, ethically and legally, data can play a pivotal role in improving the health of the population, whether this is for planning, research or for direct patient care. But it added that everyone has a right to know what is happening with their healthcare data, what is being shared for wider purposes than just their own care, and who has access to it – as well as to have the final say on whether to share it or not.

Dr Farah Jameel, BMA GP committee executive team lead for IT, said: “We have seen in recent weeks with the pausing of the GP Data for Planning and Research programme roll-out what happens when these issues are not communicated properly, and patients are not given an opportunity to take part in such important discussions.

"The final strategy will only be successful if it has the full confidence of both the public and the medical profession that data will be kept safe and secure and subject to robust safeguards. We support access to data to improve healthcare delivery, but patients must be able to trust the system and have confidence their data are subject to the highest legal and ethical standards.

“We note that the draft strategy repeatedly underlines the importance of transparency, while asserting that people must have ownership of their own data, and these must continue to be overriding principles going forward.”

What will the NHS data strategy do?

The draft strategy proposes:

  • putting patients at the heart of their health and care data, with easy access to their own healthcare records
  • giving health and care staff easier access to the right information to provide the best possible care through shared records and simplified information governance
  • enabling the proportionate sharing of data for the purpose of supporting the health and care system
  • giving adult social care high quality, timely and transparent data so they can make individualised choices to personalise care
  • modernising data architecture and infrastructure underpinning the health and care system to improve standards, protect data and stay ahead of cyber risk
  • supporting innovation for the benefit of patients and staff such as empowering patients to test and monitor changes in their vision remotely using an app, and using AI to assess data from care home worker’s reports to predict the likelihood of falls and hospital admissions of patients, enabling appropriate safeguards to be put in place
  • building on improvements to speed up access to data during the pandemic, where there is clear benefit for the system as a whole.

Professor Sir John Bell, Regius Professor of Medicine at the University of Oxford Medical Sciences Division, said: "Like most scientists, I believe use of data has been critical to advances in patient care and has the potential to enable new breakthroughs whilst the opportunity for data-driven technologies to improve our health is already with us.

"Managing healthcare data carefully and sensitively is crucial, and this new strategy is a major step forwards putting the citizen in control of their information whilst setting a clear direction to enable scientists and the NHS to use data better to look after patients now and discover the treatments of tomorrow."