Secure data environments – using data to save lives

Catherine Dampney, Director of Innovation & Transformation at NHS South, Central & West discusses how collaboration and sharing skills are helping bring to life the Government strategy to help use NHS data more effectively and save lives. She describes how Secure Data Environments (SDEs) are supporting researchers by providing easy, secure access to NHS data, work that is at the heart of the Government’s Open Data Saves Lives strategy.

A strong footprint of life science data

We have a strong footprint of life science in the UK with great access to data such as the UK Biobank, the biomedical database containing genetic, lifestyle and health information. However, currently this wealth of data is sitting in silos across different organisations. Conducting any research is time consuming with different permissions needed, which means it can take a lot of time to bring the data together.

The new Health and Social Care Secretary has recently announced how his department will expand its focus to boost economic growth with one of his three steps to achieve that goal making the UK a life sciences and medical technology powerhouse - ensuring the NHS works hand in hand with life sciences research institutes and medical technology companies to drive the development of new treatments and help grow the industries.

At the moment there is also no consistent way to achieve this and it’s not obvious what data is available for academic or commercial research. In addition, as the use of NHS data increases, it is important we continue to handle patient data safely securely and ethically. The Department of Health and Social Care and the NHS in England has recognised these issues and are now investing to move from processes that rely on data being shared, to a system where data is accessed. This has resulted in the creation of online platforms known as Secure Data Environments that enable access and, importantly, provide added protection to NHS data.

A national network that benefits all

There is now an NHS Research Secure Data Environment (SDE) Network comprising 12 SDEs that provide secure access to healthcare and social care data for research and innovation. Network members include the NHS National SDE and 11 Sub National SDEs, including Kent, Medway and Sussex (KMS), supported by NHS South, Central

The network ensures there is secure access across England to health and social care data for approved research projects led by academics, industry organisations or NHS employees such as clinical researchers.

The benefit of having a national network is that we can bring together a much a richer data set. The diversity of the English population means that NHS data has enormous value to help address problems that affect a wide range of different communities as well as small groups of people with rare conditions.

NHS analysts can use data to check the quality of existing services and identify potential improvements and medical researchers can gain a deeper understanding of diseases for new life saving medicines and treatments. This has already seen to be a benefit with some of the work that has been done with shared care records and integrated care systems (ICS) data platforms to support population health management.

Simplified processes, strong collaboration

As Programme Director for Kent, Medway and Sussex, SDE, I know that we are good at integrating data and at primary care data, while other SDEs are strong in image data for example.

KMS is part of the Southern Consortium of SDEs made up of Thames Valley & Surrey, Great Western and Wessex. Together we can provide research data for 15 million people

We collaborate closely across the current SDEs, where the teams that work together bring their different skillsets to create a systematic, easy, simplified access to this data. It’s also important that we uphold the highest standards of privacy and security of NHS health and social care data, which means that we have to operate within a framework that adheres closely to data governance and security.

Working to the five safe principles

All of our work is governed by five agreed ‘safe’ principles: safe people, safe projects, safe settings, safe data and safe outputs. These have been set out to mitigate the risk of disclosure.

We also aim to set out common policies to allow the easy access to data for the research community. It’s really all about providing access to data, not giving out or moving data. The goal is to provide tools that enable researchers to use the data for research – ie. a safe output. In the same way that the British Museum enables access to valuable artefacts such as the Gutenberg bible in a secure room for research, but the item remains in the building.

The trusted environments developed allow limited access for researchers to agreed data sets they can work with through a streamlined and simplified process. In addition, all approved data flows are published on the Data Release Register for transparency and third-party audits.

This means that once an SDE has approved a particular researcher, individuals or organisations to work with the data, then this accreditation will be valid across all SDEs.

Creating a thriving research sector

This project is one of the most exciting that I’ve worked with. We’ve been talking to research and academic communities all of whom are involved in or conduct research. We have discussed the framework required to create this access to the data environment and our research community has highlighted the benefits it will bring to patients such as access to clinical trials, innovative treatments and new drugs.

Making data more easily accessible and available helps to reduce costs and build a thriving research sector for the UK. We also hope that it will attract investment and interest, particularly as the UK is unparalleled in the amount of data we have available across our different systems and population of nearly 70million. The opportunities are enormous.

An open dialogue ensures public trust

There are a lot of safeguards in place to ensure proven identity when people are logging onto to NHS data in typical healthcare settings. In the same way we think that identity management for access to data will be key. As a collaborative group we are committed to ensuring a secure, consistent way to achieve this.

As well as working with all of the organisations, it’s also really important that we maintain a dialogue with the public to establish the guidelines and social contract under which we operate. We are having national and local dialogues with patients and lay-people involved as part of the decision-making process. Protecting data isn’t just about physical and technical security, it’s also about trust. We want the public to trust the work that we are doing and to do the right thing by them.

Equitable access will underpin success

With such a wide and far-reaching dataset we anticipate the demand will come from many different organisations. From pharmaceutical companies, health tech firms developing AI solutions and new models of care. These organisations will all need big data sets to validate research. We are striving to provide equitable access to the data, such that we do not put financial barriers in place that might prevent an individual PHD student or start-up from having access.

We have made great progress so far. We have a number of research programmes running already as trials, although realistically we are probably looking at another five years or so before it is a fully mature service.

It really is a great opportunity to bring in academia, innovators, commercial innovators, to work with health data to provide benefits for both people and the economy. We continue, as always, to be interested in hearing from organisations and people looking to do research using health data.