See Neena at our HDR UK Science Conference 2022

Neena Modi is Professor of Neonatal Medicine at Imperial College London, who’s team have developed the National Neonatal Research Database (NNRD) – an award-winning national dataset which brings together routine health data from all NHS neonatal units in England, Wales, and Scotland.

Established in 2007 through a huge collaborative effort between clinicians, parents, NHS managers and researchers, the NNRD not only aims to reduce uncertainties in clinical practice and improve healthcare for newborn babies, but also to make this process better, safer and more efficient for the healthcare staff, patients and researchers involved.

Neena, who spoke to us at our monthly Open Door session for the Gateway, explained,

Clinical teams have always been under huge pressure – perhaps even more so now – and our belief is that its wrong to ask them to record data repeatedly. Increasingly, with the use of electronic health records, it’s possible to record patient data just once and quality assure it so it can be used for a multiple uses. 

“The principle of the NNRD is to collect and store the electronic health data for all babies admitted to neonatal units in the UK in a safe, secure and well-governed way where it can be accessed to improve patient care in a multitude of ways.

“We have a unique opportunity in the UK, because every very pre-term or sick newborn baby is admitted to an NHS neonatal unit almost without exception. There is virtually zero private medicine in neonatal care. And, as the result of a huge collaborative effort, every single NHS neonatal unit in England, Scotland and Wales has committed to contributing to the NNRD.”

The NNRD exemplifies how labour-intensive, single-use and expensive data collections can be replaced with a single data source which can be used efficiently for multiple approved projects – something that is also core to HDR UK’s mission as the national institute for health data research.

Neena told us, If you can’t measure it you can’t improve it. And that’s exactly what we want this data to do: to measure and improve outcomes for babies

“Research using the NNRD has shown pre-term baby outcomes are improved in high-volume neonatal units, compared to low-volume units; that outcomes are improved with one-to-one nursing care, helping to provide evidence towards the ambition for this to become a national standard; and demonstrated that the national reorganisation of NHS neonatal units into a managed network has improved outcomes for babies.

“We’re also working with the US Food and Drug Administration to support the development of newborn medicines. Shockingly, there has only ever been one medicine specifically developed for newborns. Baby needs are hugely underrepresented in medicine, and as much of 95% of our medicines are used off-label or off-licence, so it’s fantastic to be able to work with the FDA to improve this.”

As a member of the UK Health Data Research Alliance (the ‘Alliance’), the NNRD team are now collaborating with over 60 other custodians of health data in the UK to increase alignments on standards for the use of health data for research, including key areas such as a unified approach for the developing Trusted Research Environment s(TREs) and how to best engage with public, patients and healthcare practitioners (PPPIE). And, approved researchers can gain access to the NNRD for their own work to better understand and improve neonatal care via the HDR UK Innovation Gateway. 

Neena told us, “We’re absolutely committed to standardising requests to the NNRD, and are doing this via the gateway.

“Here, researchers can make a standardised enquiry for more information or start an application which is passed on to us, rather than coming to us directly.”

The Gateway also includes detailed metadata on the dataset. And, by adhering to our FAIR principles, the gateway helps to ensure trust and transparency are maintained in how NNRD data are being made available for research.

Looking to the future, Neena said:

There are still huge opportunities for neonatal data, through linkage with other data sets, advances in technical data handling, and international collaborations. 

“For example, we’re at an advanced stage of developing the NNRD-AI, a version of the NNRD which contains specifically curated data for applications like artificial intelligence and machine learning. And the NNRD-DigitalTwin, which contains synthetic data to help researchers explore the data within the NNRD without accessing real patient data, about without concerns around breaching patient confidentiality. 

“That‘s not to say we don’t still face challenges for the future of the NNRD. We have a fragmented NHS across different providers and the four nations, and we have research divides in relation to regulation and operation. But HDR UK has been at the centre stage in helping broker some of the discussions that are focused on addressing these challenges.

Explore the NNRD on the gateway

Watch Neena present on NNRD on the Gateway