News

March 2026

Coastal Data Network (Coda Network) – addressing the health data challenges of England’s coastal communities

The Chief Medical Officer’s 2021 annual report addressing the health of coastal communities, identified the lack of data on these communities as striking and recommended, “learning networks of those leading population health in these areas should be encouraged, linked to academic institutions with an interest in building the knowledge base on health improvements”. The report recognised the important role such networks, opportunities to learn from each other, and collaboration, plays in starting to tackle what he describes as the “coastal excess” of disease. Through robust data collection and analysis better access to care and improvements to quality of care can be achieved.

And so, in response to this call for action, the Coastal Data Network (Coda Network) was formed. Established in 2022 by the Eastern Academic Research Collaboration (Eastern Arc), which comprises the Universities of East Anglia, Essex, Kent and Sussex, the Coda Network aims to enhance capacity for understanding and improving the health and lives of coastal populations. It encourages collaboration across the region, providing a space for those responsible for collecting, analysing, and using health data to learn from each other, to develop relationships of trust, and begin working together to develop solutions to recognised coastal health inequalities.

Such inequalities are hard felt in the Eastern Arc region, which stretches from Norfolk in the North to Sussex in the South. Some of its coastal communities are the most deprived areas in the country and with many having an ageing population, poor transport and infrastructure, isolation, substandard housing, lack of skills and work opportunities, and seasonality – which contribute to poorer health outcomes.

The Coda Network currently has over 150 members, representing 55 organisations. Its members recognise the value of the project, evidenced in its work both at an individual level and through collective workshops, online seminars, conferences and other events.

A newly published article – co-authored by Dr Elizabeth Ford, Associate Professor in Health Data Science at BSMS – introduces us to the work of the Coda Network as it celebrates it’s third anniversary. It discusses the network’s plans for the future, impact, and role in addressing health inequalities amongst coastal communities. The full article can be found here. Further information about the Coda Network can also be found on the project webpage.

November 2025

New animations help explain AI in healthcare

A team of researchers from Queen Mary University of London, King’s College London and BSMS have released a series of animated videos designed to help the public navigate the complexity of large language models (LLM) used in healthcare research.

The use of AI technologies like LLMs hold enormous potential but their complexity can make it difficult for patients and the public to engage with research using AI. The newly created videos aim to promote AI literacy and empower people to participate meaningfully in healthcare research.

The videos were co-designed in partnership with Social Action for Health, where community participants worked with researchers to develop scripts and storyboards, ensuring the content was clear, relevant, and engaging. The videos were produced by Really Bright Media and reviewed by public contributors to guarantee accessibility.

Dr Elizabeth Ford, Associate Professor in Health Data Science at BSMS, said: “We wanted to make sure that everyone, not just technical experts, can understand how large language models are already shaping healthcare research. By working closely with community members, we created resources that are genuinely accessible and empower people to have a voice in these conversations”.

The videos are now publicly available and can be accessed here.

September 2025

Liz gives talk at BSMS Renal Conference

Dr Liz Ford was invited to talk at the BSMS 2025 Renal Conference. Liz’s talk was titled: Health Data Resources in the Coastal Southeast.

Another filming day for the Data Hub team!

This month also involved another filming day, this time with our colleague Jon from the Sussex Integrated Dataset (SID). Jon and Liz discuss the region’s local dataset, the SID, as well as the newly launched local NHS Secure Data Environment in Kent, Surrey and Sussex (KMS SDE). The video will be available to watch soon.

June 2025

Report Published: Kent, Medway and Sussex Secure Data Environment (KMS SDE) End of Year Report

The KMS SDE is part of a national programme aimed at improving the way health and care data is used to support research. Its purpose is to provide a secure, privacy-respecting digital space where approved researchers can access linked, de-identified health and care data for public benefit. It aligns with the broader UK ambition to make better use of data to improve healthcare outcomes, reduce inequalities and speed up the development of treatments and services. Find out more about the KMS SDE here.

This recently published report captures the early progress of the KMS SDE, a collaborative and evolving programme that has taken important first steps in establishing a secure trusted data infrastructure for research and innovation. The report acknowledges key achievements, lessons learnt and future ambitions for the KMS SDE.

View the full report here >

February 2025

New paper published - What is the patient re-identification risk from using de-identified clinical free text data for health research? 

Patient medical records, notes, letters, reports, all hold important clinical information about an individual and are vital in delivering essential and continued care. This written, often detailed information, is referred to as clinical free text data. This type of data has the potential to improve the lives and health outcomes of not only the individual patient, but also the wider population and future generations if used for health research. Currently, this detailed information is trapped and under-used for health research. This is primarily due to concern from data controllers about patient privacy risks.

This paper explores and evaluates the risk of patient re-identification from clinical free text data. It presents a model to conceptualise and evaluate risk of re-identification and provides a framework by which decision-making bodies might assess the risks posed. The paper describes the additional protections in place regarding free text data, and recommends that access to such data (by approved researchers) is done safely within an NHS Secure Data Environment (SDE). The paper goes on to highlight real case studies of successful governance of free text data for research in the UK and argues that with strong safeguards in place, it is now time for the UK and NHS to transition to regularly, routinely and safely using clinical free text to conduct vital health research and improve healthcare for all.

Read the full paper here >

New paper published - “I don’t see a reason why we should be hidden from view”: Views of a convenience sample of people living with HIV on sharing HIV status data in routinely collected health and care databases in England.

People Living with HIV (PLWH) now have near normal life expectancy, yet little is understood about how HIV affects conditions of ageing. It can be difficult to recruit enough PLWH to study conditions of ageing across a large sample. One route around this is to use anonymised patient health record data, a common source of data for epidemiological research in the UK. Currently, HIV diagnostic codes are stripped out when data is processed for research, which means no research about HIV can be done using these datasets. This represents a barrier to understanding common health problems and the health trends of PLWH, which leads to health inequity for PLWH.

This study explores the views of PLWH on sharing their HIV status data in routinely collected health and social care databases in England. 37 PLWH participated in deliberative online focus groups, where they were invited to share their views and suggest safeguards they felt would allow them to feel more comfortable with this type of data sharing.

Participants were cautious about sharing their HIV status; their concerns largely stemmed from prior discriminatory experiences and the risk of re-identification. However, with assurances put in place around data security, participants felt more confident in supporting this type of data sharing. Safeguards participants identified as important in building trust and confidence were: high-tech data security; limited access and clear accountability for data users; meaningful involvement of PLWH in data and research systems; communication about data flows and uses; education about HIV to reduce stigma. Moving forward the authors recognise and encourage a commitment to long term relationship building with the HIV community, fostering trust and encouraging transparency and openness.

Having engaged deliberately with PLWH from a range of backgrounds, the authors suggest from their findings that sharing HIV status in NHS research datasets could be achieved and if well planned, transparent and collaborative with the HIV community, would likely be supported by PLWH. Sharing HIV status for research will: build a deeper understanding of the ageing HIV population, improve services, and encourage better health, care and wellbeing for PLWH.

Read the full paper here >