How the NHS uses patient data to support treatment and to plan services is not a new topic of debate. Indeed, it has been the subject of intense engagement for well over a decade, And whilst the road has been bumpy to say the least, the voice of patients, social care users and the public have changed policy for the better.
We, and our organisations, are long-term advocates for protecting patient confidentiality, encouraging the use of health data to deliver public benefit, and providing people with reliable information about how their health data is used. It is from this perspective that we approach this topic and it’s why we continue to work with decision makers like NHS England and the Department of Health and Social Care to ensure people’s concerns are heard.
What is the NHS Federated Data Platform, and what will it do?
It’s quite an imposing-sounding title, but in its simplest terms, data federation is a process that uses software to connect many existing systems so that they can function as one.
The NHS Federated Data Platform aims to enable different parts of the NHS to talk to one another so that the health and social care system can make better use of its own data. In the first instance, the platform will use data to support five specific activities, all of which have the overall goal of helping the NHS improve how it arranges and delivers care. This has the power to do enormous good. For example, hospitals across a region can use it to share data about when their operating theatres have free slots so that people can be treated sooner and waiting lists reduced.
You can read more about its intended uses in NHS England’s FAQs.
What is the issue?
Improving care through better use of data is a goal we all support. We’re confident the public would, too, if they knew enough about how the FDP works.
However, we didn’t feel there was enough information to explain this clearly or to address questions about what this means for people’s data privacy. For example, people have questions such as “Will the supplier be able to see my data and use it for its own purposes?”.
People are worried about the role ‘big tech’ plays within the NHS and whether it will erode their data privacy or if their data will be exploited for profit. If people are to support what the NHS plans to do with data, they need to feel confident that confidential information will be kept safe and only used for public benefit, by appropriate individuals.
What have we done to help improve things for the public?
We raised these concerns individually and as a group with the Department of Health and Social Care and NHS England, who were receptive to our feedback.
We told them that it was incredibly important for people, ourselves included, to have clear information about the FDP so we can all understand its purpose, its benefits, and the protections in place to keep it safe and preserve confidentiality. To win support for data initiatives like this, the NHS must provide facts to alleviate worries, fill in information gaps, and push back on misconceptions and misinformation.
Without the backing of the public and healthcare professionals, large data projects falter or fail; because of the public benefit the FDP could bring to patient care, we want to protect it from that fate.
An online engagement portal for the public about the FDP
NHS England listened to our concerns and responded by developing an engagement portal for the public. When you visit the online portal, you can do three things:
- Read about all aspects of the FDP
- Submit questions if the information on the site doesn’t answer your personal questions, which a member of staff at NHS England will respond to
- Sign up to be part of the public engagement around the FDP
The FDP will also be included as a topic to be discussed and explored as part of NHS England’s forthcoming public engagement programme in 2024.
We think that this is a good start. But it’s important to remember that this project is in its very early stages. There are still unknowns and things to work out. This is normal for any large-scale IT project. NHS England is still working its way through a lot of the finer details, including the information governance for the project, some of which it can only do with the supplier onboard.
In addition to the portal, NHS England have also responded to existing feedback with several important clarifications and commitments.
- It has guaranteed that data will not be shared under the FDP until new “Privacy Enhancing Technologies” (PET) are developed and in place (expected April 2024). It is worth mentioning that these technologies are being developed by a different company to the one supplying the FDP. We expect more information to be published on the PET later this year.
- It has confirmed that the FDP can only be used to carry out the five specific activities already outlined, and that if they want to expand this in future then this would require them to engage and consult with patients and the public.
- It has provided reassurance that only people who need to see data as part of their role in the NHS will be able to access it and that private companies will not have access to it. The supplier of the FDP will only ever have access to data when approved and strictly supervised by the NHS.
What we will continue to do
As a collective, we have agreed to become members of NHS England’s independent Check and Challenge Group for the FDP, and the CEO of National Voices will Chair these meetings. Through it, we will continue to voice the public’s priorities and concerns as we advise NHS England on its plans for the FDP. A patient and public engagement and communications advisory panel is also advising NHS England on the FDP.
We will review with NHS England the evidence and insight it receives from people sharing their views via the new online portal. We will continue to push for transparency, clear communications, and public engagement. We will also continue to advocate for guidance and support for health professionals. Through the Check and Challenge Group we will continue to share feedback with NHS England, for example on highlighting the need to have plans in place to help those who may be approached by their patients with questions or requests for information about the FDP.
What we ask of you
News about both big tech's involvement with NHS data and expensive NHS IT projects often makes the headlines. As a result, we expect that the FDP will receive a lot of attention on social media and in the news in the coming weeks.
However, health data is a fiendishly complex and nuanced subject, clinically, technically, legally and ethically. Even those working in this area sometimes struggle to connect the dots. This means that well-intentioned voices in the media can sometimes miss important facts or context. We have also seen much misinformation on social media. This is perhaps unsurprising, given that, as we all know, amplifying risks will always attract the most social media attention.
But it’s a big problem if we end up with only part of the picture or a distorted version of the truth. For example, if potential risks – and any big project has risks – are not communicated alongside information about safeguards and the benefits the project will bring, then the project risks losing support and amounting to nothing. And we think doing nothing to fix the current problems that get in the way of data being used to improve how the NHS delivers our care is not an option.
Facts matter, and we urge you to seek information from multiple sources for yourself if you are interested or have concerns.
- NHS England Federated Data Platform frequently asked questions
- National public engagement on the use of health data
- National Data Guardian website (including the NDG’s blogs in November 2022 and August 2023 on the FDP)
- National Voices’ website and blog on the FDP in August 2023
- Association of Medical Research Charities website and patient data page
- Understanding Patient Data website, key pages relevant to the FDP, and blog on the FDP in September 2023
- New report from the Patients Association on the relationship between the public, their data, and the health and care system published in September 2023
Jacob joined in May 2023 as Chief Executive of National Voices. He is a committed advocate for working with people accessing health and care services and the wider public to help improve the accessibility and quality of the care they receive. He loves to combine deep qualitative insights with quantitative data to challenge traditional thinking on how to tackle policy challenges. Prior to working for National Voices, Jacob spent almost 10 years helping to build the Healthwatch network. In this time, he led successful nationwide policy influencing campaigns on a huge variety of topics, from maternal mental health services to access to NHS dentistry. He has also worked in local Government and for the British Library.
Nicola became Chief Executive of AMRC in November 2021, having previously been a Trustee of AMRC for five years. Her background is in policy, strategy and engagement. Nicola led the policy team at Wellcome for fourteen years, focusing on research base funding, innovation in the NHS, and data sharing. Prior to that she worked at the Nuffield Council on Bioethics and the Science Museum. Nicola has had a particular focus on ensuring health data can be used in a responsible and trustworthy way for research, including establishing the Understanding Patient Data initiative. Nicola is on the Genomics England and UK Biobank Boards, and was awarded an MBE in New Year’s Honours 2020 for services to science.
Dr Nicola Byrne
Dr Nicola Byrne is the National Data Guardian for health and adult social care in England, having been appointed to the role in March 2021 by Matt Hancock, Secretary of State for Health and Social Care. Dr Byrne has a 20 year background working in mental health, and retains her clinical role as a consultant psychiatrist at South London and Maudsley NHS Foundation Trust. Prior to becoming National Data Guardian, she held positions as the trust’s Deputy Medical Director, Caldicott Guardian and Chief Clinical Information Officer.
Nicola is the Head of Understanding Patient Data, responsible for setting the direction of UPD with the support and sign-off from the UPD Steering Group. She joined UPD from the UK Health Security Agency, where she was the Head of Delivery within the Data Operations directorate, leading projects and programmes to enable better use of health data to drive public health action. Nicola has been working within the field of health data for the last three years, including holding the role of secretariat for the Goldacre Review on the use of health data for research and analysis. Prior to this, she has worked on other digital and data programmes across the Civil Service, as well as holding policy and project delivery roles, in government departments such as the Home Office, the Department for Work and Pensions, and the Department for Business, Energy and Industrial Strategy. Nicola is passionate about using data in safe and secure ways to improve health, and promoting effective community engagement.