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Measuring what matters: How our research is contributing to healthier and more inclusive lives
How do we know whether healthcare is genuinely improving someone’s life? Clinical measures can tell us whether a treatment has worked in medical terms, but they do not always capture what matters most to the person receiving that treatment: how they feel, what they can do, and the impact their condition has on their everyday life.
In the Centre for Outcome Measure Development and Psychometrics (CODA) we are helping to address this challenge by putting people’s experiences at the heart of health research.
Based within Psychology in the School of Humanities and Social Sciences, CODA specialises in the development of outcome measures, including Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs). These tools enable patients to report directly on their health, quality of life and experiences of healthcare, providing evidence that can help researchers and healthcare professionals understand outcomes from the patient’s perspective.
This work has an important connection to the United Nations Sustainable Development Goals (SDGs), particularly SDG 3: Good Health and Well-being, which aims to ensure healthy lives and promote well-being for people of all ages.
Putting people at the centre of healthcare
For healthcare to improve well-being, we first need to understand what successful treatment looks like to the people experiencing it.
In CODA, we use rigorous psychometric methods to develop measures that capture how people think, feel and behave, and how health conditions and treatments affect their lives. Crucially, its research is informed by and undertaken in partnership with people with lived experience.
This person-centred approach helps ensure that the outcomes being measured reflect what patients themselves consider important. By creating robust ways of capturing those experiences, CODA's research can contribute to a stronger evidence base for evaluating treatments, services and models of care.
The Centre has particular expertise in women’s health, rheumatology and rare diseases, while we have also supported the development of PROMs across areas including cancer, dermatology, vascular disease, immunodeficiency, lung disease, burns and urology.
The CODA research team at LBU
Supporting more inclusive health research
Our work in CODA also connects with SDG 10: Reduced Inequalities.
Health experiences and outcomes are not the same for everyone. Some conditions and patient populations can be poorly represented by existing measurement tools, particularly where measures do not adequately capture the experiences and priorities of those living with a condition.
Developing measures alongside people with lived experience can help address these gaps. It gives patients an opportunity to shape how health outcomes are defined and evaluated, helping ensure that their voices form part of the evidence used in research and healthcare.
CODA’s work in areas such as women’s health and rare diseases demonstrates why this matters. If we want healthcare systems that respond to diverse needs, we need appropriate and scientifically robust ways of understanding those needs.
Partnerships that create impact
Achieving the Sustainable Development Goals cannot happen through individual organisations working alone. SDG 17: Partnerships for the Goals recognises the importance of collaboration, and partnership is embedded in CODA’s approach.
We work in partnership across health and care sectors with researchers, healthcare professionals, people with lived experience and other key stakeholders involving collaboration with NHS, academic, charitable and commercial partners.
These relationships allow expertise in psychology and psychometrics to connect with clinical knowledge and, importantly, patients’ own experiences.
A powerful example of CODA’s approach is APPRAISE – A Patient-reported outcome measure for PRolApse, Incontinence and meSh complication surgery.
Different surgical treatments are available for pelvic organ prolapse and stress urinary incontinence. However, there is currently no surgical intervention-specific PROM capable of capturing the full range of effects of these procedures, including surgery for complications associated with pelvic mesh.
Led by Leeds Beckett University, APPRAISE (funded by the National Institute for Health and Care Research) has recently developed a new PROM that better supports women to report the impact of pelvic floor surgery on their quality of life, whilst also capturing their experiences of care.
APPRAISE has addressed this gap by working with patients and specialists to understand what outcomes matter and developing a new measure that can better record women’s experiences. It will be rolled out across NHS hospitals in England in Autumn 2026, enabling the risks and benefits of different interventions to be measured and compared, while providing evidence to support healthcare professionals, policymakers and future service improvements.
CODA’s mission is ultimately about measuring what matters. By developing rigorous, person-centred outcome measures, its researchers are helping us understand health and healthcare not simply through clinical results, but through their impact on people’s lives.
That provides an important contribution to the wider ambition of the Sustainable Development Goals: creating healthier, fairer and more inclusive societies in which people’s experiences and well-being are placed at the centre of progress.
Professor Georgina Jones
Georgina Jones is a Professor of Health Psychology. Her research uses both quantitative and qualitative research methods and focuses on patient-reported outcome measure development, psychometrics, and patient decision-making with a special focus on women's reproductive health.
