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 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 that 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 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 that 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.

Rachel Power, Chief Executive of the Patients Association, Dr Vin Diwakar, Interim National Director of Transformation, NHS England and Professor Stephen Powis, National Medical Director, NHS England.