Public asked to shape future use of health data by the NHS

Members of the public will be asked to help shape how the NHS uses their health data to improve patient care, as part a series of major events next year.

The events, starting in the new year and continuing until March 2025, will gather public views on digital and data transformation in the NHS.

Among the programmes and topics to be discussed will be the Federated Data Platform – a key software platform that joins up existing NHS data to help speed up diagnosis, reduce waiting times and hospital stays.

The large-scale engagement events, supported by up to £2 million of funding, will provide the public with a genuine means of informing and shaping policy around the use of their health data.

The work builds on the ‘Powered by Data’ campaign launched by NHS England in June to showcase where health data has delivered significant benefits for patients, and society more broadly.

For example, the COVID-19 pandemic highlighted the crucial role of joined-up data, with the success of the world-leading NHS vaccination programme driven by analysis of local data to help anticipate the virus, identify and protect the most vulnerable and deliver jabs where most needed.

Dr Vin Diwakar, National Director of Transformation at NHS England, said: “Better use of data brings huge benefits for patients, ensuring more joined-up care and better use of NHS resources, and leading to faster cancer diagnosis, shorter wait times for elective operations and reduced stays in hospital.

“Public support is integral to how we better use data to improve care – and the best way to do this is through effective and meaningful engagement. Over the course of next year, we will continue to highlight how data is used across the health and care system and it is vital that we involve the public in shaping future data use and how it can save lives.”

The public will be able to discuss and find out more about major programmes already outlined in the government’s Data Saves Lives strategy to help provide patients with a simpler, more meaningful choice about their data.

It will also allow the health and care system to meet its commitments in the Data Strategy to develop products with the involvement of the public.

Rachel Power, Chief Executive of the Patients Association, said: “Many patients are passionately interested in how their data are used and how they are safeguarded. Our new report on a possible data pact between the NHS and patients shows patients recognise the potential for data use to improve care.

“But it also highlighted how sceptical many patients are. The Patients Association supports a transparent and genuine public engagement programme on how patient data are used. We’d encourage all patients to get involved.”

Nicola Perrin MBE , Chief Executive of the Association of Medical Research Charities (AMRC), said: “Better use of NHS data is essential for so many things to improve our health – from individual care, to research to planning services but the public must have confidence in the safeguards that protect their data. Public engagement is vital to understand properly what public expectations are, and to help design a system that uses patient data for health benefit. Research charities look forward to being involved in the conversation.”

Dr Jeanette Dickson, Chair of the Academy of Medical Royal Colleges, said: “We all saw the value of data driven healthcare during the Covid-19 pandemic – helping patients receive the care they need in the right setting at the right time were all down to the rapid advances that were made in digital infrastructure and connectivity. We welcome the development of a federated data platform not least because it is long overdue.

“With the system and staff under so much pressure and with so many patients on the waiting list, we must build on what we have rather than let the perfect be the enemy of the good. That said, there must, of course, be proper checks and balances in place, not least through adherence to GDPR and by ensuring proper data sharing agreements are in place between different parts of the healthcare ecosystem.

“We must be extremely vigilant to ensure this precious data is only put to the use for the clinical benefit of patients and the wider NHS system and we will sound the alarm if those fears aren’t addressed.”

Nicola Hamilton, Head of Understanding Patient Data, said: “Understanding Patient Data welcomes the announcement of large scale engagement events to discuss the use of health data. This is urgently needed to ensure the public has a greater voice in how their data is used, what choices they have, and what safeguards they feel are necessary to improve potential benefits and reduce potential harms.”

Dr Nicola Byrne, National Data Guardian, said: “I welcome the progress towards the public engagement commitments as promised in the Data Saves Lives Strategy. It is vital to listen and engage with the public when considering policy changes or technical improvements that will impact on how Health and Care Data is used. I look forward to being able to further advise and support this public dialogue work.”