Taking patients with us on the Federated Data Platform

The use of patient data has already changed the NHS and it will continue to do so. The possibilities to improve patient care are huge. However the NHS uses data from different IT systems which don’t talk to each other causing frustration for staff and delays for patients.

Improving connections between IT systems so that NHS staff can plan and deliver services and treatment more effectively has the potential to help patients experience better care. This will help us all.

There are three things patients tell us regularly about their experiences of NHS care:

  1. They want to know their healthcare teams have the information they need to treat them readily available.
  2. They want to be involved in decisions made about their care
  3. They don’t want to have to tell their story every time they use the NHS

These are the common themes from patient surveys, focus groups and the Patients Association’s free, confidential helpline that manages thousands of enquiries from patients nationwide every year.

They are also what NHS staff raise when we discuss what they find challenging in their day-to-day roles.

Part of the solution is the better use of technology and data. Improving connections between IT systems allows NHS staff to plan and deliver services and treatment more effectively.

Across the country, NHS teams are piloting new software solutions to these common problems; they are looking at how NHS trusts can better manage the data they already hold to provide a better experience of care for patients.

The right information to hand

The feeling that the NHS is joined up, well administered and easy to navigate, gives patients the confidence that they are being treated well and that NHS staff are delivering the best experience of care possible.

In other pilot sites, we are seeing this play out in real-time; in University Hospitals Dorset NHS Foundation Trust teams are using the software to align their waiting list with information such as staff rosters and annual leave to improve scheduling for patients and staff.

This has enabled them to see extra operating theatre capacity, which is being used to provide care to those patients who are most in urgent need as well as the longest waiting patients.

Shared decision-making

Patients and clinicians have been calling for the better use of technology to improve shared decision-making for years. Doing this well means asking patients what matters to them, gathering and recording this information at different points in their care journey and ensuring it stays with them at every point of care.

No one wants to stay in hospital longer than they need to, yet discharge is often delayed, in part, because services are not as coordinated as they could be with better data shared between the teams who care for patients. Some areas are trialling a care coordination function, tracking all admitted patients in real-time through their hospital journey and making sure all members of a patient’s hospital care team can access up-to-date discharge notes.

This allows patients and clinical teams to communicate clearly and more easily about the next steps and expectations, so everyone involved in a patient’s care has access to the same information and decision making is genuinely shared.

Telling your story once

Patients and staff alike feel frustrated when information clinical teams need to do their jobs is not readily available. For patients, this frustration is worse when they have already provided this information somewhere else.

This is why NHS England is investing in a Federated Data Platform (FDP) to support NHS trusts and integrated care boards to make the most of the information they already hold. Supporting staff to access information for direct care safely and securely.

This data platform is software which will enable NHS organisations to bring together operational data – currently stored in separate systems – to support staff to access the information they need in one safe and secure environment. This could be the number of beds in a hospital, the size of waiting lists for elective care services, or the availability of medical supplies.

Patient involvement

The relationship between patients and their data is intensely personal. Research by the Patients Association found patients are mainly positive about their data being shared to support their direct care.

They recognised the improvements it makes to their care, how safely care is delivered, and that sharing health data can prevent patients from needing to repeat themselves at different points in their care journey. Addressing patients concerns about their data is a necessary part of enabling the use of data to improve patients’ care.

We must talk to patients in ways they understand. Language and jargon used to talk about data has the potential to exclude many patients, which can lead to misinformation and only further mistrust.

Yet outside of their own care, patients questioned how data are used in the NHS and more widely in the health system.

The Patients Association has published the findings from conversations that it ran as part of a project exploring what a data pact between the NHS and patients could look like. We would encourage health and care leaders to read it.

In response, the NHS intends to work up and publish a first draft of a possible pact, informed by the feedback in this report and continue to work with the National Data Advisory Group and other stakeholders.

Next steps

Over the coming weeks, NHS England will announce the next steps in its plan to procure, configure and roll out the Federated Data Platform (FDP).

The FDP has the potential to free up clinical time to allow clinicians to focus on direct patient care and shared decision-making. We have seen examples of how it has sped access to cancer care, reduced wait times for elective operations and reduced stays in hospital.

We recognise that this conversation with patients about the FDP and data more generally, should be an ongoing dialogue as the landscape on data use in the health and care system evolves.

Over the coming months, the NHS will continue working with patients to highlight how this software can and should be used to transform care. We look forward to seeing more benefits for patients and staff alike.

Dr Vin Diwakar

Medical Director for Transformation and Secondary Care National Medical and Transformation Directorates NHS England.

Vin Diwakar is the Medical Director for Transformation in the National Transformation Directorate and leads on the secondary care portfolio in the National Improvement Directorate. He provides clinical leadership to improvement and transformation programmes including those which use improvement science, technology, digital, and data. He leads teams which are supporting improvement and transformation of a number of different clinical areas including diagnostics, urgent, emergency, acute and planned care and is responsible for improving clinical effectiveness.

In his previous role, he provided clinical leadership to London’s health and care system and was a key member of the multiprofessional regional team which led the capital through the COVID-19 pandemic.

Professor Stephen Powis

Stephen Powis is the National Medical Director of NHS England and Professor of Renal Medicine at University College London.

Previously he was Medical Director (and latterly Group Chief Medical Officer) of the Royal Free London NHS Foundation Trust from 2006 to 2018. Professor Powis was also a member of the governing body of Merton Clinical Commissioning Group for five years and a Director of Healthcare Services Laboratories LLP.

He is a past Chairman of the Association of UK Universities (AUKUH) Medical Directors Group and has been a member of numerous national committees and working groups, including the Department of Health Strategic Education Funding Expert Group. He is a past non-executive director of the North Middlesex University Hospital NHS Trust, including a period of eight months as acting chairman.

He is a past chairman of the Joint Royal Colleges of Physicians Training Board (JRCPTB) Specialty Advisory Committee (SAC) for Renal Medicine and a former board member of Medical Education England. He was Director of Postgraduate Medical and Dental Education for UCLPartners from 2010-13. He is a past treasurer and trustee of the British Transplantation Society and a former member of the UK Transplant Kidney Pancreas Advisory Group.

He has also served as a member of the Renal Association Executive Committee. He was Editor of the journal Nephron Clinical Practice from 2003 to 2008. In 2017 he became the inaugural Editor-in-Chief of the journal BMJ Leader. He has been a trustee of several charities, including the Royal Free Charity and the Healthcare Management Trust.

Rachel Power

Rachel became Chief Executive of the Patients Association in 2017, bringing with her over 20 years’ experience of health and social care in the not-for-profit sector.

She has overseen a significant period of change at the Association. Rachel is a member of the NHS Assembly and also a member of several national health bodies.