Dr Sarah Bowers is a Clinical Lecturer at the University of St Andrews. Sarah recently completed her PhD through the Multimorbidity Doctoral Training Programme, supported by the Wellcome Trust. She is a Palliative Medicine doctor who has research interests in capturing palliative care in population data, multimorbidity and values-based healthcare. Dr Emma Maun is Quantitative Research Manager at Marie Curie. Emma carries out research on a range of palliative and end of life care topics for Marie Curie, using bespoke survey, administrative and nationally representative survey data, with personal research interests in loneliness, social isolation and unpaid caregiving.
In October 2025, we attended the Health Data Research UK (HDRUK) conference, which showcased developments in the UK’s linked data resources and some of the cutting-edge research that uses them. As a presenter (Sarah) and participant (Emma), both with a keen interest in how linked data can strengthen palliative and end of life care (PEOLC) research, we wanted to share some reflections from the conference.
The opportunities and challenges of linked data for the PEOLC sector have been set out before (1, 2), and since these articles, researchers have drawn on routine and linked data in increasingly sophisticated ways. Large-scale datasets now allow research to explore small or underserved groups of people, or the intersections of several characteristics, in ways that would be impossible with smaller datasets. The conference showcased several fascinating examples of this, including Sarah’s own research (3). Progress was evident, yet many of the challenges identified almost a decade ago remain. Below, we highlight some the most pressing of these challenges.
Greater linkage but key gaps remain
Researchers can now access different combinations of linked Census, mortality, hospital and nationally representative survey data for the four nations of the UK. However, critical gaps remain, particularly for social care and PEOLC, where digitalisation of routinely collected data is still developing and fragmented across many small private and charitable providers. In addition, what might constitute meaningful routinely collected measures of quality for both specialist and generalist palliative care are live research questions (4). Calls to improve data on PEOLC have been made before. With the current momentum around data-driven health systems, there is hope that meaningful action will be taken, for instance by piloting data linkage with a small number of providers and indicators.
Where to look and how to access data?
There is no denying the challenges of finding and then accessing the right data for PEOLC research. Secure Data Environments/Trusted Research Environments/Research Data Centres largely fulfill the same functions but application processes and timeframes currently differ. The Health Data Research Gateway, showcased at the conference, aims to reduce researcher legwork involved in finding the right data for their research questions. Data providers presented work to develop common application methods and reduce timeframes, which could benefit researchers.
Public acceptability and representativeness
Many data access processes stem from systems designed to ensure safe and transparent research, addressing public concern about the use of routinely collected health data (5). Public unease has far-reaching consequences for the representativeness of the data we use and the conclusions that can be drawn from analyses. This is in addition to known high levels of missing data and poorly recorded protected characteristics in much routine health data (5). Keynote conference speakers, including the NHSE’s Chief Data & Analytics Officer, emphasised how essential public messaging is and called for a greater emphasis on the risks of not sharing data. For PEOLC, engaging patients and the wider public in discussions of data use is fundamental to acceptance of research involving linked data. As important, but for different reasons, is integrating patient and public voices into data-focused research projects at all stages to shape research.
Summary
The HDRUK conference highlighted many areas of innovation around linked data infrastructure, clearer governance pathways and improving public engagement. We’re excited and hopeful to see how these changes influence data availability and research, ultimately to help improve PEOLC for people.
Sarah Bowers LinkedIn: www.linkedin.com/in/spbowers-
Emma Maun LinkedIn: www.linkedin.com/in/maun-emma
References
1. Davies JM, Gao W, Sleeman KE, Lindsey K, Murtagh FE, Teno JM, et al. Using routine data to improve palliative and end of life care. BMJ Supportive & Palliative Care. 2016;6(3):257-62.
2. Tanuseputro P. Delivering care to those in need: Improving palliative care using linked data. Palliative Medicine. 2017;31(6):489-91.
3. Bowers SP, Ward M, Weir MC, Mills SE, Williams L, Bowden J, Quirk F. Use of unscheduled care in the last year of life for people with multiple long-term health conditions: a retrospective cohort study of 299,361 decedents. BJGP Open. 2025 Sep 10:BJGPO.2025.0049. doi: 10.3399/BJGPO.2025.0049. Epub ahead of print. PMID: 40930843.
4. Hurley E, May P, Matthews S, Normand C, Johnston BM. What gets measured in palliative care? A review and synthesis of routine data collection in 16 countries. Health Policy Open. 2025;8:100141.
5. Sudlow, C., Uniting the UK’s health data: A huge opportunity for society. A review of the UK health data landscape commissioned by the Chief Medical Officer for England, the UK National Statistician and NHS England’s National Director for Transformation (2024), https://www.hdruk.ac.uk/helping-with-health-data/the-sudlow-review/