The NHS Federated Data Platform, the Single Patient Record and the Health Data Research Service – what are they, and how do they relate to the UK’s pharmaceutical industry?

Health data is often in the news– but making sense of what is being discussed is not always easy.

The NHS Federated Data Platform, the Single Patient Record and the Health Data Research Service have become hot topics of discussion in recent times. This article explains what each one is, and how they relate, or not, to the UK’s pharmaceutical industry.

The NHS Federated Data Platform

The NHS Federated Data Platform is a secure platform that aims to connect NHS data across NHS organisations to improve patient care, streamline services, and help the NHS make better-informed decisions about how services are run.

The platform only includes information that the NHS already collects and uses, like hospital health records, waiting lists, operating theatre timetables and staff rotas.

The core purpose of the platform should be to support improved patient care by promoting efficient NHS services and ultimately improving health outcomes for patients within the NHS. The platform should also reduce the administrative burden for NHS staff and reduce the variation in access to care across the country. It is not designed to be used for health research.

The Federated Data Platform therefore has little direct relevance to pharmaceutical companies; it is for use by the NHS, not by external organisations.

The Single Patient Record

The UK government wants to set up a Single Patient Record for every NHS patient in England. The aim is to allow anyone involved in providing patient care the ability to see all the relevant and appropriate information in their medical records, whether it was entered by a GP, a hospital healthcare professional, or another care worker.

This is a positive step, and should mean that all the appropriate people providing care can see what medicines a patient is taking. This should help make sure that patients are on the right doses of the right medicines.

The Single Patient Record will also provide a full longitudinal record. That is, it will make it possible to join up a person’s health data from cradle to grave. This makes it easier to do health research that tracks how diseases change over time, and how well medicines are working.

From a pharmaceutical industry perspective, the Single Patient Record will enable new insights that can better inform frontline prescribing, and unlock insights that can shape future research activity.

Security of information is paramount – how effective information security is delivered and who can see what information in an individual’s health data record are key topics of public discussion. Some parts of England already have joined-up health records, and it will be important for the new Single Patient Record to learn from existing examples of best practice.

The UK Health Data Research Service

The final, and most important area of interest to the pharmaceutical industry is the Health Data Research Service. The clue is in the name: it is being designed specifically for health research. The aim of the service is to coordinate, standardise and join up what is currently a messy, complicated mix of different sources of health data. This is a new service - although the organisation has been set up it is not yet providing any services.

For the pharmaceutical industry, this has enormous potential. It is currently very difficult for researchers with approved research projects to get hold of the health data they need in the UK, because the data is not joined up and all the different organisations holding the data have their own rules and processes. By bringing this data together under common standards, the service could significantly accelerate health research in the UK, helping to speed up the development and assessment of new medicines and vaccines.

Public trust in health data

For all these services to achieve their intended benefits, it’s crucial that they are built around the highest standards of privacy, security and governance so that patients are clear on how their data will be used and by whom.

The government needs to oversee how the health data services it funds are working in practice. Ongoing checks against clear standards would have avoided the problems that recently occurred with the UK Biobank and uncontrolled disclosure of data, which the UK Biobank is now addressing.

Robust, binding safeguards are needed to ensure NHS data can never be used for purposes beyond serving or improving individual or public health.

To earn and keep that trust, the government must demonstrate that it understands public concerns. It must put strong safeguards in place, backed by independent advisory groups that include patient and public voices. And it must clearly communicate how the data is being used to improve NHS outcomes and performance.

By Janet Messer, ABPI Director of Health Data and Digital Policy