Data saves lives: Lessons to enable healthcare research

Health data or Real-World Evidence is data routinely collected for care but is also a hugely valuable resource that can help our understanding of what works and what doesn’t to improve care and as a source for comparison during late-stage trials.

As of December 2022, investments are being made to support the development of an interoperable network of Sub National Secure Data Environments (SNSDEs) under the Data for Research and Development programme. More recently, in May 2023, the UK Chancellor announced £650 million investment to pump into prime life sciences research and clinical trials in the UK.

The building blocks are in place for the UK to accelerate life sciences research. And it’s needed. The UK has an aging population with the rate of complex co-morbidities increasing, and one in four people are at risk of a mental health condition. This is compounded by an already stretched healthcare system. Access to more data will mean better patient outcomes – whether in the short-term through immediate care or longer-term by bringing new treatments to market quickly.

Get research data into the right hands

The technology to ingest, store, and process research data is cheaper than ever before. The Trusted Research Environment designs from Microsoft, Turing Institute, and others are publicly available through open-source repositories. The launch of the NHS’s Data for Research and Development programme has identified, and is supporting, the acceleration of research using de-identified real-world data (meaning no patient identifiable data is included in the data set), with the appropriate consents.

We’ve worked with some of the leading SDEs in the NHS - and have learned the following lessons:

Exploit cloud technologies to improve secure and scalable access

Cloud technologies such are Microsoft Azure TRE are now in live operation. With cloud services available, affordable, and easy to set up it’s possible to have precisely the technology platform needed to support research. An initial platform can be up and running in weeks and expand and contract capability to fit the needs of the research. We recently completed the build of the TRE for University of Liverpool and Mersey Care and researchers are actively using the platform for research to create equitable access to mental illness treatment.

Publicise access and pricing

Through the NHS Data for R&D programme the SDE will publicise its services, making it easier for researchers to see what is available and how they need to access it. Once a compliant research project is ready to go, it will be more straightforward to contract and access researchers wherever they are in clinical research, academia, and life sciences. Historically, there has been demand for access to NHS data, but it’s been difficult to know who to ask to gain it. As data becomes accessible and demand materialises, pricing access in a fair and consistent way will be paramount to success and delivering value to patients.

Increase communication to drive consent and improve care

Communicating the discoveries of research to the general public is important. Communication during the Covid pandemic shows the public are interested and engaged in the advances in research. It’s widely understood that people want to participate in clinical trials if it may improve their lives or those of loved ones. Shared Care Record, Secure Data Environment, or Trusted Research Environments (TREs) and future-related investments should be used to help publicise active research projects and the discoveries or outcomes of the study. This will lead to a virtuous cycle of people consenting to be a part of research, as well as increasing throughout projects, ultimately improving care.

Align research benefits with the innovation lifecycle

Estimating the benefits of research in compelling business cases to secure funding and support from participating Trusts, as well as tracking the realisation of these benefits as they translate into improvements in healthcare, will drive alignment throughout the innovation life cycle. This includes healthcare investment prioritisation and care delivery, as well as discovery science, development of new products, and wide adoption through new care models. It will also ensure funding is continuously available from the public purse.

Establish data roles and shared services

Real world data can be messy, incomplete, and difficult to understand. It needs to be handled with care, curation, catalogues, and good data governance. The people, such as those on ethics committees, data controllers, and researchers, and data catalogues are available. But more often these people are busy supporting the running of care services. If research activity is of sufficient size and volume, then it will be possible to recruit additional data scientists to help with the curation and cataloguing. Alternatively, establishing a shared service may be a way of ensuring the right support services are available to support research.

Build trust through transparency and collaboration

Building on the above, a secure data environment requires an ecosystem of data suppliers, for example hospital trusts, GP surgeries, mental health experts, and community providers, and the conditions for everyone to participate takes time and trust. Good governance processes and transparency that shows whose data is being used, as well as feedback on data quality issues will, over time, build trust and improve engagement in the research processes.

Start small, learn what works, then scale

Making a change, such as the introduction of new ways of working and new services inevitably requires a leap of faith. Starting small and scaling, whilst learning what researchers want and need is a way of managing the risk. It also offers the opportunity to learn by doing. Working with smaller research groups, learning about what works and doesn’t will set up the right foundations for scaling the service to a wider research base in the future.

Ensuring the right, fair, and funded access to NHS data through services such as Secure Data Environments presents a tremendous opportunity to create the conditions for health innovation and truly transform care and services for the UK population. But it’s going to take more than the technology to get it right.