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Research
Our research plays a pivotal role in improving palliative and end-of-life care, addressing critical aspects such as dementia care; support for underserved populations; enhance communication between patients, families, and healthcare providers; and effective symptom management.
Current Projects
- Applying the Getting Palliative Medications Right Toolkit in practice: co-design of quality improvement for impact
Effective palliative care aims to ensure patients receive maximum benefit and minimal harm from symptom control medications. Our earlier study, Getting Palliative Prescription Medications Right, identified the hidden activities involved in medication management across home, hospital, and hospice settings. Based on these findings, a toolkit was developed, aiming to improve medication management processes and ensure better outcomes for patients. The aim of this project was to apply the evidence based Getting Palliative Medications Right toolkit in practice and to inform quality improvement initiatives in a multi-centre study of palliative medication management.
Working with four Marie Curie places (Bradford, Devon, Glasgow and West Midlands), the objectives included co-producing a customized list of local priorities to improve medication management, developing place-based improvement projects, and sharing an approach to implement change that can be used in future projects. A Joint Impact Team, comprising UCL researchers and place-based experts (both professionals and community members) from the four collaborating places, met monthly online for six workshops. Using a rapid participative approach (based on the Activity System Evaluation Framework), we evaluated work processes, identified challenges in the system, and completed improvement work activities to develop local medication management systems. This work was funded by the Marie Curie Research Impact Fund.
Access the Getting Palliative Medications Right toolkit
Related work and publications:
- Marie Curie Virtual Conference 2025 Launch of the Medication Management Toolkit
- Hospice UK poster presentation
- Pharmaceutical journal article on palliative medicine access and supply
- Developing a Core Outcome Set to evaluate the impact of prognostication in people living with advanced cancer
Caitlin’s PhD project was co-funded by the Economic and Social Research Council (ESRC) and Marie Curie. Although various methods exist to estimate survival in advanced cancer, no single approach is considered the best. Research in this area is challenging because studies assessing different prognostic methods often measure different outcomes, making comparisons and synthesis difficult.
This PhD addressed this issue using a mixed methods design to develop a Core Outcome Set (COS) (a minimum set of outcomes that should be measured and reported in all future prognostic impact studies). Caitlin conducted a systematic review to identify potential prognostic outcomes, followed by semi-structured interviews with patients, caregivers, and clinicians to explore additional outcomes important to them. A Delphi survey and consensus meeting were then conducted to finalise the COS, resulting in the identification of nine core outcomes to standardise outcome selection, collection, and reporting in future research. The project was completed in September 2024, with the thesis successfully defended in January 2025. Caitlin was supervised by Prof. Paddy Stone, Dr Nicola White, and Dr Bella Vivat.
Further information and contacts can be found on Caitlin Medlock's UCL Profile.
- Developing and refining a virtual reality intervention that will help to manage pain for people living with advanced cancer (VRcan)
The aim of this 15-month study, funded by NIHR, is to understand if there is a role for virtual reality in the management of pain experienced by people who are living with advanced cancer. At four locations across England and Wales (Brighton, Cardiff, Liverpool, and London), we are completing this study in three phases:
Phase 1: We are asking people who have advanced cancer to try the technology and give their feedback on how and where they might use it to help with their pain.
Phase 2: We are asking people who are employed at each location for their opinions on the technology. We want to know what will help to support the use of the technology and what barriers there might be. We will use this information to develop a manual of use.
Phase 3: We will test if the manual is helpful in the implementation of VR in the settings.
This study will provide vital evidence on the use of virtual reality as part of routine practice and will lay the foundation for larger trials.
Further information and contacts can be found on the VRcan webpage.
- Do national reporting and learning system medication incidents in palliative care reflect patient and carer concerns about medication management and safety?
This is a mixed methods study of palliative medication incidents using a NHS patient safety incident dataset. This study compares National Reporting and Learning System palliative care medication incidents with patient and carer concerns about medication. This work is conducted by a core collaborative team at Cardiff University and Cambridge University supervising additional clinicians and students gaining research experience. A stakeholder event was held in Swansea (April 2024). Funding for this project was provided by Central and North West London NHS Foundation Trust.
Related work and publications:
- Exploring the cultural, religious and spiritual experiences of people from minority ethnic backgrounds receiving palliative care
Inayah’s PhD research is a qualitative study exploring how cultural, religious, and spiritual identities shape end-of-life experiences for patients from minority ethnic backgrounds. Through interviews and ethnographic observations, it will explore how patients, families and healthcare professionals navigate palliative care, considering how standardised healthcare practices engage with diverse needs. This research highlights the complexities of applying broad ethnic categorisations in clinical and research settings and explores how patients and healthcare professionals understand and respond to cultural and religious needs at the end of life. By exploring these experiences, this work aims to contribute to palliative care policies and practices that further recognise the perspectives of patients from minority ethnic backgrounds.
The findings hope to inform discussions on health inequalities and how care can be more attuned to different cultural and religious frameworks. Alongside this doctoral research, Inayah has engaged with international academic communities, presenting at EAPC 2023 and 2024 in Rotterdam and Barcelona and the Public Health Palliative Care Conference in Bern, Switzerland. Further disseminated will be through peer-reviewed publications and an accepted abstract for EAPC 2025 in Helsinki. This project is co-funded by Marie Curie and UCL and supervised by Professor Paul Higgs, Dr. Sarah Yardley, and Dr. Henry Llewellyn.
Further information and contacts can be found on Inayah Uddin's UCL Profile.
- Getting palliative prescription medications right at home, in hospital & hospice: an Activity Theory analysis to improve patient safety and confidence in palliative care
This study, Marie Curie Research Grant [MC-19-904], examined prescribing and medication use in palliative care as a series of multi-step processes requiring coordination of many organisational systems, enacted through patients, carers and professionals. Approximately 20% of NHS serious incidents related to palliative care involve prescription medications, with the underlying causes poorly understood. This research investigated how medication management processes differ between actual and intended practices; and how factors such as professional roles, patient behaviour, and organisational boundaries contributed to these discrepancies.
The study used the conceptual tools of Activity Theory to study effort (work/activity) for prescribing and medication use. This entailed analysing real-life practices in palliative care and how these compared to intended processes described in care guidelines and service models. Factors that impacted quality and safety were identified by focusing on how divisions of labour and practice etiquette among patients, carers, and professionals influenced medication use within and across the contexts of home, hospital and hospice. As a result of this work, a Getting Palliative Medications Right Toolkit (see impact study below) has been developed.
Related work and publications:
- Intervention to optiMise Palliative caRe for peOple with liVed Experience of homelessness (IMPROVE) programme
This 3-year project, funded by NIHR/ESDR, will evaluate the impact of a Community of Practice programme (called IMPROVE) designed to help improve care for people experiencing homelessness with palliative and end of life care needs in local areas. The IMPROVE intervention has been piloted in 9 places in the UK so far. The project will evaluate whether and how the IMPROVE intervention works, and where and when it works best - so that it’s potential for widespread use can be maximised. People with a lived experience of homelessness are involved throughout.
The 3 main phases of the work are: (1) 40 Interviews with prior COP attendees and service users where IMPROVE has been piloted (2) Analysis of this data and a related update of the IMPROVE programme resources and (3) An action learning set of 6 newly recruited sites to run the programme simultaneously with research observations and evaluation
The programme aims to improve access to quality palliative and end of a life care toa group who have some of the poorest morbidity and morality outcomes in the population, and poor access to care. It is hoped the project will have both practical national and international impact. The programme resources, and advice on how to run a community of practice and maximise its benefit will be available to everyone at the end of the programme.
Further information and contacts can be found on the Homelessness Webpage.
- Mapping voluntary sector and local government financial support services in England and Wales available for people living with a terminal illness: Understanding the barriers and facilitators to access
This is a mixed-methods study funded by Marie Curie and led by Dr Nicola White and Dr Nuriye Kupeli. The study explores financial support available for people with terminal illness and their families struggling with living costs. We conducted a systematic search of online registries and local authorities to look for sources of support in England and Wales. Out of 317 local authorities in England, 118 reported living costs data. Out of 71 charities providing financial support, 23 reported data on living costs. Our search continues.
A follow-up survey with teams managing financial support is ongoing. We interview people with terminal illness/bereaved carers, referrers, and service providers, to identify barriers/facilitators to access. We ran a patient and public involvement and engagement workshop exploring the experiences of applying for financial support. Our impact work will focus on equity in access to financial services in deprived communities.
Related work and publications:
- Understanding conversations in heart failure
The overall aim of Christina’s PhD is to understand how prognostic information about heart failure disease trajectory, its uncertain clinical course, and expected survival, is shared and discussed between healthcare professionals and heart failure patients. Understanding how to navigate these sensitive conversations is needed for person centred care and can also confer benefits for clinicians and healthcare services.
This project commenced in March 2024 and includes a systematically conducted qualitative evidence synthesis and conversation analytic study in hospital and community settings. Findings from this work will contribute towards recommendations for guidelines, training, and interventions that wish to improve communication between clinicians and patients. This project is funded by an NIHR doctoral fellowship and supervised by Dr Sarah Yardley and Professor Steven Bloch.
Further information and contacts can be found Christina Chu's UCL Profile.
- Use of ‘close-to-practice’ methodologies to explain and change the impact of interpersonal relationships in quality improvement
Funded by The Health Improvement Studies (THIS) Institute, this study explores the systematic need for relationships to create not just safe but good healthcare when someone is living with either serious physical (palliative care) or severe and enduring mental illness. Rich insights into the `relational glue’ and `relational reach’ that is essential for patients, carers and professionals to navigate healthcare have been developed into a theory of collective social safety.
The study aims to challenge current approaches to healthcare system design for mental healthcare and/or palliative care and stimulate dialogue about relationship as a legitimate means to mitigate inadequate attention to people in system design. Multiple stakeholders in healthcare systems participated in over 100 interviews and 30 observation days plus a series of workshops based on Activity Theory (Change Laboratory) methods. We are experimenting with creative ways of sharing research findings, including artistic collaborations.
Further information and links to related work and publications can be found on the This.Institute webpage.
Additional related work and publications:
- Using Virtual Reality in a Hospice
A growing body of research shows that virtual reality (VR) can reduce symptoms such as pain and anxiety in people with incurable illnesses. Systematic reviews on the use of VR in palliative care have nonetheless highlighted the limitations of this research, including small sample sizes and inconsistency in how VR is used.
This study, conducted for Katie’s PhD, will explore how VR could best be used in a hospice in a way that benefits patients and is practical for staff to implement. This will be achieved through various methods, including a survey on how hospices are using VR, interviews with hospice staff and patients, and a six-month intervention where hospice patients will be able to use VR as often as they like. These different approaches will help to understand how VR would be used in a real-world setting.
The findings of this study will provide clinicians and policymakers with guidelines for how VR can be implemented as part of routine care, clarifying the benefits of VR and recommending how often to use VR to maximise benefits for patients. This project is funded through UBEL, an Economic and Social Research Council (ESRC) funded organisation, and supervised by Dr Nicola White, Dr Victoria Vickerstaff, Dr Briony Hudson, and Dr Libby Sallnow.
Further information and contacts can be found on Katie Flanagan's UCL Profile.