Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management (CovPall)

Title	Infographic - Palliative Care for the Treatment of Complex Symptoms
Description	The CovPall infographic, co-designed with patients, caregivers, healthcare professionals, researchers, and the two key target groups-(1) members of the public, including patients and their loved ones, and (2) senior leaders in health and social care, such as Integrated Care Boards (ICBs), local authorities, and voluntary, community, faith, and social enterprise (VCFSE) organizations-visually presents key findings from the CovPall study. Titled "Palliative Care for the Treatment of Complex Symptoms," the infographic challenges misconceptions by demonstrating that palliative care is not just for end-of-life care but also plays a crucial role in managing complex symptoms and comorbidities. It highlights evidence-based approaches to symptom management, improving understanding and integration of palliative care across different healthcare settings. Designed to be clear, accessible, and user-friendly, the infographic provides concise, evidence-based information for both the general public and healthcare decision-makers. It has been widely disseminated through platforms such as the Palliative Outcome Scale (POS) website, King's College London, the Cicely Saunders Institute, and the King's Health Partners (KHP) Learning Hub, ensuring broad national and international reach.
Type Of Art	Artefact (including digital)
Year Produced	2024
Impact	The CovPall infographic has had notable impacts by enhancing awareness and understanding of palliative care among diverse audiences. Co-designed with patients, caregivers, healthcare professionals, and system leaders, it presents complex research findings in a clear, accessible, and visually engaging format. By challenging misconceptions and emphasizing palliative care's role beyond end-of-life care, the infographic has improved knowledge about symptom management and care integration. It has been widely disseminated through platforms such as the Palliative Outcome Scale (POS) website, King's College London, the Cicely Saunders Institute, and the King's Health Partners (KHP) Learning Hub, reaching healthcare professionals, policymakers, and the general public across multiple countries. The infographic's accessibility ensures that patients, caregivers, and decision-makers can engage with palliative care evidence in a meaningful way, supporting better-informed healthcare decisions and promoting long-lasting improvements in care integration and accessibility.
URL	https://www.kcl.ac.uk/nmpc/assets/covpall-infographic.pdf

Title	Palliative Care in COVID -19
Description	The movie is co-produced with patients, caregivers, healthcare professionals, researchers, and the two key target groups: (1) members of the public, including patients and their loved ones, and (2) senior leaders in health and social care, such as Integrated Care Boards (ICBs), local authorities, and voluntary, community, faith, and social enterprise (VCFSE) organizations. Building on patient-centric evidence from the CovPall study-recognized as the most impactful applied research in the NIHR Applied Research Collaboration South London 'Know Your ARC' awards-the film explores palliative care accessibility and integration across different healthcare settings. Through a collaborative and co-designed approach, the movie challenges misconceptions that palliative care is only for end-of-life scenarios, emphasizing its essential role in managing symptoms and complex conditions. It also serves as an educational tool, sharing key evidence from the CovPall study on best practices in symptom management. By developing and evaluating accessible, user-friendly, and free resources, the film ensures that knowledge about palliative care reaches both the public and healthcare decision-makers, fostering long-lasting improvements in care integration and accessibility.
Type Of Art	Film/Video/Animation
Year Produced	2024
Impact	The development of this artistic and creative product has had notable impacts, reaching diverse audiences through multiple channels. The short film and accompanying infographic have been widely disseminated to enhance awareness and understanding of palliative care. It is hosted on key platforms, including: (1)Palliative Outcome Scale (POS): A specialized platform for palliative care outcomes research, with over 20,800 registered users and 3,000 visitors per month. In 2024, the site had 22,702 visits, 51,719 unique pageviews, and 5,420 unique downloads, with visitors from 142 countries, primarily from the UK (28%), USA (12%), and Australia (8%). (2) King's College London: The research webpage serves as a hub for international and national scholars across various disciplines, as well as media professionals, further broadening the film's reach: https://www.kcl.ac.uk/research/covpall Cicely Saunders Institute (CSI): A world-leading center for palliative care research, rehabilitation, and policy, attracting visitors from the UK and globally. It provides an accessible resource location for healthcare professionals, researchers, and policymakers: https://www.kcl.ac.uk/cicelysaunders/research-impact/outcome-assessment-measures (3) Additionally, the film is featured on the King's Health Partners (KHP) Learning Hub, further strengthening its visibility among professionals and decision-makers in palliative care: https://www.kingshealthpartners.org/latest/dr-mevhibe-hocaoglu-khpeople (4) NIHR SL ARC: https://arc-sl.nihr.ac.uk/news-insights/blog-and-commentary/co-designed-co-developed-and-co-presented-reflections Through these channels, the creative product has contributed to improving integration, accessibility, and awareness of palliative care, making evidence-based resources available to a broad and international audience.
URL	https://youtu.be/ufJnCaBmZaQ?si=5sDd8zXoXkGDPc3J

Title	Palliative Care- shifting the focus from equality to equity
Description	This film is part of an online training focusing on the needs and experiences of ethnically diverse patients and families at the end of life. The aim of this free online training is to improve understanding of how to deliver equitable care to these groups. Research has shown that those from ethnically diverse groups may not receive the care they need and that treating all patients equally, may result in inequity of outcomes (eg distress of patients and families at the end of life). This film is based on research conducted by the CovPall Study Team and the paper led by Bajwah S et al Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study. BMJ Support Palliat Care. 2021 Sep 12:bmjspcare-2021-003083. doi: 10.1136/bmjspcare-2021-003083. Epub ahead of print. PMID: 34511409.
Type Of Art	Film/Video/Animation
Year Produced	2023
Impact	The film has been viewed by 3221 viewers on youtube, was launched at the European Association of Palliative Care annual conference and part of training modules freely available on (1) the King's Health Partners Platform. The full version if the film is available here with eight assessment questions. A certificate of completion (with CPD points) is provided at the end of the training. This is open to everyone. The full online training (Palliative Care: shifting the focus from equality to equity) (2) On the eELCA learning platform. The full version if the film is available here with eight assessment questions.
URL	https://www.youtube.com/watch?v=-6Lz65gGY5o

Title	https://www.youtube.com/watch?v=-6Lz65gGY5o
Description	26 minute educational film hosted on YouTube. Aimed at all health professionals but especially those in palliative and end of life care. Aimed at improving delivery of equitable care to all ethnicities.
Type Of Art	Film/Video/Animation
Year Produced	2023
Impact	Within one month, the full film had been viewed 1,300 times. To date, the full film has been viewed >3,200 times
URL	https://www.youtube.com/watch?v=-6Lz65gGY5o

Description	The CovPall study had substantial and wide ranging non-academic impact. Impact on Policy. For example, the findings highlighted that UK-wide policies may have disproportionately disadvantaged people from ethnically diverse groups at the end of life during the Covid pandemic. Additionally the study revealed that healthcare providers often struggle to distinguish between equal and equitable care, contributing to distress and disparities in outcomes. In 2022, this research was cited in UK Parliament POSTnote on Palliative and end-of-life care. UK Parliamentary POSTnotes (Parliamentary Office of Science and Technology notes) are concise, impartial, and informative documents that provide parliamentarians with up-to-date information on scientific and technological issues. These notes are prepared by the Parliamentary Office of Science and Technology (POST), a parliamentary body that exists to support members of both the House of Commons and the House of Lords in understanding complex scientific and technological topics that may come up in policymaking. They are often used by parliamentarians when debating legislation or when making decisions on matters that have scientific or technological implications. In 2023, this research was cited in World Health Organization policy: Transforming the health and social equity landscape: promoting socially just and inclusive growth to improve resilience, solidarity and peace. Impact of clinical teams and practice. Dr Sabrina Bajwah, together with the CovPall Study team, developed an educational film for all professionals working in palliative and end of life care. The film aims to improve understanding of the unique needs of those from ethnically diverse groups, why addressing these is essential, the difference between equality and equity and practical steps to deliver equitable care. This film reached wide audiences, including non-academic groups, with over 2,500 views to date. It has been presented at the European Palliative Care Congress and Hospice UK. Furthermore, in July 2023, the film was integrated into the national e-learning platform eELCA (e-End of Life Care for All), used by NHS and social care professionals. This e-learning resource includes the film alongside eight assessment questions, reinforcing its role in professional education. (Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK, Oluyase A, Allwin C, Dunleavy L, Preston N, Cripps R, Maddocks M, Sleeman KE, Higginson IJ, Walshe C, Murtagh FEM; CovPall study team. Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study. BMJ Support Palliat Care. 2021 Sep 12:bmjspcare-2021-003083. doi: 10.1136/bmjspcare-2021-003083. Epub ahead of print. PMID: 34511409.) The CovPall study has substantially influenced palliative and end-of-life care teams and staff, providing vital insights into how services adapted during the COVID-19 pandemic. This provided evidence to >450 services on how to improve their service and boosted their understanding of their practice. Conducted across multiple countries, it highlighted key challenges such as symptom management, workforce resilience, and service integration, while demonstrating the critical role of palliative care in crisis response. The IPOS-Cov tool is now being used by clinical teams in palliative care and beyond, including intensive care and in ambulance services, to improve assessment and practice. Public understanding of palliative care and support for integrated care boards: Building on the research findings, the CovPall-Partners project was launched to translate research into practical solutions. Working collaboratively with patients, caregivers, and healthcare professionals, the project developed user-friendly educational materials, including an infographic and a short film, to raise awareness about managing complex symptoms like breathlessness and agitation. It also provided strategic guidance to healthcare leaders, ensuring that Integrated Care Boards and social care partners could implement evidence-based improvements. Beyond research, CovPall has influenced policy discussions, shaped healthcare training, and enhanced public understanding of palliative care. Recognised with awards for its applied research, the study has strengthened the foundation for integrating palliative care within health systems, ensuring better support for patients and families in future health crises. Read more: https://www.kcl.ac.uk/news/covpall-partners-enhance-palliative-care-integration-access
First Year Of Impact	2021
Sector	Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Education,Healthcare,Government, Democracy and Justice
Impact Types	Cultural Societal Economic Policy & public services

Description	Cicely Saunders International Action Plan for Better Palliative Care (Jan 2021)
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	You Matter Because You Are You, a seven-point Palliative Care Action Plan that identifies the major challenges now facing the palliative care system, and outlines evidence-based solutions for each of them. Findings from CovPall were included in the Cicely Saunders International Action Plan for Better Palliative Care.
URL	https://csiweb.pos-pal.co.uk/csi-content/uploads/2021/01/Cicely-Saunders-Manifesto-A4-multipage_Jan2...

Description	How many people need palliative care? Updated estimates of palliative care need across the UK, 2017-2021 Data and evidence briefing (Marie Curie)
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	The Marie Curie report, "How many people need palliative care?" (July 2023), has influenced UK policy, practice, and public awareness. Policy changes include a £100 million government investment in hospices to expand palliative care services. In practice, hospices and healthcare providers are enhancing community-based care to meet rising demand and reduce hospital admissions. Public awareness has grown, with the report gaining media attention and encouraging discussions on end-of-life care preferences. These changes aim to improve access to quality palliative care across the UK.
URL	https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2023/how-many-...

Description	Influenced training of practitioners and researchers
Geographic Reach	Multiple continents/international
Policy Influence Type	Influenced training of practitioners or researchers
Impact	Data was presented to clinicians and researchers on how palliative care and hospice services have been impacted by the covid-19 pandemic and how they responded. These presentations have taken place online and also during the teaching of our MSc students who come from different nations of the world. The information provided have helped clinicians and researchers to understand how the pandemic has affected services, challenges experienced and associated factors. The learning from this study has been disseminated widely and will assist in planning for new waves of this and other pandemics in the future.

Description	Marie Curie Report: Public attitudes to death and dying in the UK
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	The insights from this report have informed policymakers, healthcare providers, and advocacy groups about the public's views on end-of-life care. By highlighting areas such as the importance of pain management, the need for dignity in care, and the gap in advance care planning, the report serves as a foundation for developing strategies to improve palliative care services and public engagement in end-of-life discussions.
URL	https://www.mariecurie.org.uk/globalassets/media/documents/policy/public-attitudes-to-death-and-dyin...

Description	NIHR national cross-ARC Palliative and End of Life Care collaboration. An update for DHSC and NHSE 01 02 2023
Geographic Reach	National
Policy Influence Type	Implementation circular/rapid advice/letter to e.g. Ministry of Health

Description	State-of-Play Report: Palliative Care Delivered During COVID-19, By NHS Improvement, London
Geographic Reach	Local/Municipal/Regional
Policy Influence Type	Citation in other policy documents
Impact	The report found that hte COVID pandemic challenged the NHS to innovate rapidly to meet the urgent clinical need to treat large numbers of critically ill symptomatic people suffering from this new disease. NHS England and NHS Improvement (London) set up the 'Real Time Evaluation, Learning & Innovation Cell' (Evaluation Cell) to evaluate key service delivery changes and to support evidence-based policy and decision making to inform the regional reset programme. The first report drew heavily on the CovPall study findings. It concerns the 'integrated palliative care teams' element of care delivered during the first wave of COVID-19 in London. It provides a state-of-play synthesis of learnings from End of Life Care (EOLC) and palliative care interventions delivered during the first wave of COVID-19 in London. Regional academic and clinical experts came together in a workshop to deliver two aims - review and recommendations from current practice and identification of a key evaluation research proposal to better inform: 'How do we improve the lives of Londoners with COVID-19 who might be entering their last year of life?' Key findings are: 1. Demands on care and location a. There was huge surge in demand on palliative and end of life care services, in particular hospital palliative care teams and community teams became extremely busy, including those supporting care homes and at home nursing. b. To respond to this need for support services changed how they were working and provided 7 day a week services, many clinical academics provided additional support and staff worked long hours and days. c. Palliative care teams found themselves caring for many different groups of patients: they had their existing patients with progressive illness and families already known to their services and now often trying to reduce face to face contacts; and new patients not previously known to palliative care services and without previous care plans, now seriously ill with COVID-19, some dying from it, especially patients with multiple morbidities. All 42 London palliative care services responding to the CovPall survey cared for patients with COVID-19. d. There was a shift in care with more patients being cared for at home, including wanting to be cared for and to die at home, and fewer being admitted to inpatient palliative care units or hospices, possibly because of fears over visiting restrictions.
URL	https://www.england.nhs.uk/london/london-clinical-networks/our-networks/end-of-life-care/end-of-life...

Description	The King's Fund: Dying well at home: commissioning quality end-of-life care
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	In summary, The King's Fund report has played a pivotal role in shaping policies and practices related to end-of-life care in the UK, particularly concerning the increasing number of individuals choosing to die at home. Its influence has led to more integrated, data-driven, and equitable approaches to commissioning and delivering end-of-life care services.
URL	https://www.kingsfund.org.uk/insight-and-analysis/reports/dying-well-home-commissioning-quality-end-...

Description	Transforming the health and social equity landscape Promoting socially just and inclusive growth to improve resilience, solidarity and peace
Geographic Reach	Multiple continents/international
Policy Influence Type	Citation in other policy documents
Impact	The report proposes and contributes to strategy framework to advance health for the almost one billion people living in the WHO European Region. The report aims to transforming the Health and Social Equity Landscape adds vital data and signposts action that any country in the WHO European Region can use to increase trust and enable people to live secure and resilient lives in healthy, fairer and more prosperous societies, today and for future generations.
URL	https://researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf

Description	UK Government Select Committee Publications: Written evidence submitted by Dr Lesley Williamson and Professor Katherine Sleeman, on behalf of the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London (ADY0402)
Geographic Reach	National
Policy Influence Type	Contribution to a national consultation/review
Impact	The Cicely Saunders Institute's evidence influenced UK palliative care policy and practice by prompting government discussions on integrating palliative care, improving service delivery, and enhancing access for patients. These changes aim to address care disparities, ensuring equitable and higher-quality end-of-life care across the UK.
URL	https://committees.parliament.uk/writtenevidence/116996/pdf/

Description	UK Parliament POSTnote on Palliative and end-of-life care.
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	The POSTnote summarises the key components of P&EOLC and recent changes in policy. It also identifies inequalities and challenges in the provision of accessible P&EOLC services. The note reviews evidence on the impact of the COVID-19 pandemic on the provision of care and outlines key trends.
URL	https://researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf

Description	UK Parliament Research Briefing
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	This POSTnote 675 (July 2022) has influenced UK palliative and end-of-life care (PEoLC) policy through key changes: Policy Reforms - The Health and Care Act 2022 mandates Integrated Care Boards (ICBs) to commission palliative care, ensuring more consistent services. Strategic Frameworks - The "Ambitions for Palliative and End of Life Care" framework was updated to improve equitable access and quality of care. Funding Boost - The UK government allocated £400 million to hospices during COVID-19 to expand capacity. Benefit Accessibility - The Social Security (Special Rules for End of Life) Bill (2022) extends fast-tracked disability benefits to terminally ill patients expected to live 12 months or less. Ongoing Challenges - Workforce shortages and funding disparities continue to create inconsistencies in care quality. These changes aim to improve policy, funding, and accessibility, but the full impact on patient outcomes is still emerging.
URL	https://post.parliament.uk/research-briefings/post-pn-0675/

Description	UK Parliament Research Briefing
Geographic Reach	National
Policy Influence Type	Citation in other policy documents
Impact	This POSTnote 675 (July 2022) has influenced UK palliative and end-of-life care (PEoLC) policy through key changes: Policy Reforms - The Health and Care Act 2022 mandates Integrated Care Boards (ICBs) to commission palliative care, ensuring more consistent services. Strategic Frameworks - The "Ambitions for Palliative and End of Life Care" framework was updated to improve equitable access and quality of care. Funding Boost - The UK government allocated £400 million to hospices during COVID-19 to expand capacity. Benefit Accessibility - The Social Security (Special Rules for End of Life) Bill (2022) extends fast-tracked disability benefits to terminally ill patients expected to live 12 months or less. Ongoing Challenges - Workforce shortages and funding disparities continue to create inconsistencies in care quality. These changes aim to improve policy, funding, and accessibility, but the full impact on patient outcomes is still emerging.

Description	UK Parliament: Submitted our research to their Areas of Research Interest
Geographic Reach	National
Policy Influence Type	Contribution to a national consultation/review

Description	An evidence synthesis of holistic services for refractory breathlessness in advanced malignant and non-malignant disease
Amount	£128,613 (GBP)
Funding ID	HS&DR/16/02/18
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start

Description	Better integrating palliative care and improving access through partnerships and co-design across all settings (CovPall - Partners)
Amount	£30,484 (GBP)
Funding ID	MRF-145-0019-DG-HIGG-C0951
Organisation	Medical Research Council (MRC)
Department	Medical Research Foundation
Sector	Charity/Non Profit
Country	United Kingdom
Start	02/2023
End	01/2024

Description	Better integrating palliative care and improving access through partnerships and co-design across all settings (CovPall - Partners)
Amount	£30,484 (GBP)
Funding ID	MRF-145-0019-DG-HIGG-C0951
Organisation	Medical Research Council (MRC)
Department	Medical Research Foundation
Sector	Charity/Non Profit
Country	United Kingdom
Start	02/2023
End	02/2024

Description	Clinical Doctoral Research Fellowship (Supervisor)
Amount	£269,174 (GBP)
Funding ID	ICA-CDRF-2015-01-008
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	06/2016
End	06/2018

Description	Developing 'frailty fit' pulmonary rehabilitation services for people with chronic obstructive pulmonary disease
Amount	£564,969 (GBP)
Funding ID	CDF-2017-10-009
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start

Description	Development of an educational film to improve the delivery of equitable palliative care to patients and families from ethnically diverse groups
Amount	£29,166 (GBP)
Funding ID	MRF-145-0015-DG-BAJW-C0926
Organisation	Medical Research Council (MRC)
Department	Medical Research Foundation
Sector	Charity/Non Profit
Country	United Kingdom
Start	06/2022
End	09/2025

Description	Doctoral Research Fellowship (Co-applicant)
Amount	£257,949 (GBP)
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	03/2017
End	03/2020

Description	Evaluation of the Covid-19 pandemic response in palliative and end of life care: Connecting to boost impact and data assets (CovPall-Connect)
Amount	£49,994 (GBP)
Funding ID	HDRUK2020.145
Organisation	Health Data Research UK
Sector	Charity/Non Profit
Country	United Kingdom
Start	01/2021
End	06/2021

Description	Marie Curie Research Grants Scheme
Amount	£457,400 (GBP)
Organisation	Marie Curie
Sector	Charity/Non Profit
Country	United Kingdom
Start	05/2016
End	12/2018

Description	Marie Curie Research Grants Scheme
Amount	£288,437 (GBP)
Organisation	Marie Curie
Sector	Charity/Non Profit
Country	United Kingdom
Start	08/2016
End	08/2019

Description	Minimal versus specialist equipment in the delivery of pulmonary rehabilitation: a randomised controlled trial.
Amount	£346,450 (GBP)
Funding ID	PB-PG-0816-20022
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start

Description	NIHR Clinical Doctoral Research Fellowship
Amount	£269,174 (GBP)
Funding ID	ICA-CDRF-2015-01-008
Organisation	National Institute for Health and Care Research
Department	NIHR Fellowship Programme
Sector	Public
Country	United Kingdom
Start	05/2016
End	05/2019

Description	NIHR Clinical Trials Fellowship
Amount	£40,167 (GBP)
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	11/2014
End	08/2015

Description	NIHR Cross-Programme Research partnership on functional loss and rehabilitation towards the end of life
Amount	£99,270 (GBP)
Funding ID	NIHR135171
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start

Description	NIHR Doctoral Research Fellowship (Supervisor)
Amount	£240,074 (GBP)
Funding ID	DRF-2014-07-089
Organisation	National Institute for Health and Care Research
Department	NIHR Fellowship Programme
Sector	Public
Country	United Kingdom
Start	08/2015
End	08/2018

Description	NIHR Doctoral Research Fellowship (Supervisor)
Amount	£240,074 (GBP)
Funding ID	DRF-2014-07-089
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	01/2015
End	12/2018

Description	NIHR Research for Patient Benefit
Amount	£287,403 (GBP)
Funding ID	NIHR201060
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start

Description	National Institute of Health Research Flexibility and Sustainability Funding
Amount	£11,004 (GBP)
Organisation	National Institute for Health and Care Research
Department	NIHR Clinical Research Network (CRN)
Sector	Academic/University
Country	United Kingdom
Start	01/2014
End	04/2014

Description	PRP (PCR-01-C19) Stage 2 Recovery, Renewal, Reset: Research to inform policy responses to COVID-19
Amount	£181,764 (GBP)
Funding ID	NIHR202326
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	01/2021
End	12/2021

Description	Post-Doctoral Fellowship
Amount	£311,744 (GBP)
Funding ID	PDF-2011-04-048
Organisation	National Institute for Health and Care Research
Sector	Public
Country	United Kingdom
Start	11/2011
End	10/2014

Description	Rapid funding call to use and enrich the data within the Data & Connectivity National Core Study (NCS) capability
Amount	£49,994 (GBP)
Funding ID	HDRUK2020.145
Organisation	Health Data Research UK
Sector	Charity/Non Profit
Country	United Kingdom
Start	01/2021
End	06/2021

Description	Rapid review of service delivery models for older people at the end of life to maximise quality of life
Amount	$43,900 (USD)
Organisation	World Health Organization (WHO)
Department	Kobe Centre
Sector	Public
Country	Japan
Start	08/2017
End	12/2017

Description	Roy Castle Lung Cancer Foundation Project Grant
Amount	£34,325 (GBP)
Organisation	Roy Castle Lung Cancer Foundation
Sector	Charity/Non Profit
Country	United Kingdom
Start	02/2014
End	01/2016

Description	The Dunhill Medical Trust Research Grant - Understanding the social determinants of outcomes important to older people at the end of life: reducing social inequality in palliative care
Amount	£170,406 (GBP)
Funding ID	RTF74/0116
Organisation	The Dunhill Medical Trust
Sector	Charity/Non Profit
Country	United Kingdom
Start	11/2016
End	10/2019

Description	What is the relationship between regional COVID-19 palliative care responses and COVID-19 prevalence, mortality, admissions, discharges; business / social impacts? Findings boost CovPall impact, inform national responses, enhance data assets."
Amount	£49,994 (GBP)
Funding ID	HDRUK2020.145
Organisation	Medical Research Council (MRC)
Sector	Public
Country	United Kingdom
Start	12/2020
End	09/2021

Title	Integrated Palliative Care Outcome Scale for COVID-19 (IPOS-COV)
Description	IPOS-COV (Integrated Palliative Care Outcome Scale for COVID-19) is a patient-centred, proxy-reported measurement tool designed to assess symptoms and concerns in patients with severe COVID-19. It was adapted from the original IPOS through expert consultation and psychometric testing, ensuring its relevance for rapidly deteriorating patients. The tool includes four subscales (Breathlessness-Agitation, Gastrointestinal, Drowsiness-Delirium, and Flu-like symptoms) and demonstrates good internal consistency, validity, and responsiveness. It supports timely symptom management in palliative care settings and distinguishes between different levels of disease severity.
Type Of Material	Physiological assessment or outcome measure
Year Produced	2023
Provided To Others?	Yes
Impact	The development of IPOS-COV has had several notable impacts: (1) Enhanced Symptom Assessment - It provided the first validated, patient-centred tool specifically for severe COVID-19, allowing healthcare professionals to systematically assess and address key symptoms in critically ill patients. (2) Improved Palliative Care - By capturing rapid symptom changes (with a 12-24 hour recall period), IPOS-COV enabled timely interventions, improving comfort and care quality for patients receiving palliative support. (3) Better Clinical Decision-Making - The tool helped clinicians distinguish disease severity, identify patients at higher risk of deterioration, and guide treatment plans, including oxygen and symptom management strategies. (4) Research and Policy Influence - IPOS-COV contributed to data-driven insights into severe COVID-19 symptoms, potentially influencing palliative care guidelines and pandemic response strategies. (5) Scalability for Future Use - Its adaptation and validation process set a precedent for developing rapid-response outcome measures in future pandemics or emerging diseases, ensuring better preparedness for similar health crises.
URL	https://arc-sl.nihr.ac.uk/news-insights/latest-news/new-brief-patient-centred-measure-patients-sever...

Title	CovPall - Survey of Palliative Care Services
Description	The CovPall dataset is a comprehensive, multinational observational study examining the responses of palliative care services during the COVID-19 pandemic. Conducted between April 23 and July 31, 2020, the study gathered 458 valid responses from palliative care services worldwide, including 277 from the UK, 85 from the rest of Europe, and 95 from other global regions. The survey encompassed various service settings, with 261 inpatient palliative care units, 261 home care teams, 217 hospital palliative care teams, and 119 home nursing teams participating. The primary objective was to understand how these services adapted their practices, the challenges faced, and the innovations implemented during the pandemic. This dataset provides valuable insights into the delivery, workforce dynamics, and symptom management strategies of palliative care services amidst a global health crisis.
Type Of Material	Database/Collection of data
Year Produced	2021
Provided To Others?	Yes
Impact	The CovPall dataset has provided crucial insights into how palliative care services adapted during the COVID-19 pandemic, informing both clinical practice and policy responses. By capturing data from 458 palliative care services worldwide, it has highlighted workforce challenges, symptom management strategies, and innovations that emerged in response to the crisis. The dataset has supported evidence-based decision-making, helping services enhance care delivery, resource allocation, and support for patients and families. Additionally, it has contributed to research on palliative care resilience, guiding improvements in pandemic preparedness and shaping future healthcare policies for palliative care in emergency situations.
URL	https://healthdatagateway.org/en/dataset/802

Description	All Ireland Institute of Hospice and Palliative Care
Organisation	All Ireland Institute of Hospice and Palliative Care
Country	Ireland
Sector	Charity/Non Profit
PI Contribution	Dissemination of findings. Providing clinicians with the opportunity to share their experiences of delivering palliative care during the pandemic.
Collaborator Contribution	Dissemination of the CovPall survey among their networks to facilitate recruitment.
Impact	Clinicians; healthcare workers
Start Year	2021

Description	CAPES fellowship awarded to Dr Mevhibe Hocaoglu
Organisation	Sao Paulo State University
Country	Brazil
Sector	Academic/University
PI Contribution	Dr Hocaoglu presented the aims, objectives, methodology and outputs of the CovPall-Partners project to medical, nursing students, academics, researchers and clinical teams. The emphasis was on how co-design methodology informed by implementation theories could be put to practice to share information about the main evidence of the CovPall study, including how to best manage symptoms and transform the understanding and integration of palliative care evidence so more people can benefit in a long-lasting way. In a series of seminars, and workshops we discussed the importance of stakeholder engagement and co-design in maximizing the impact of palliative care evidence. We discussed the strategies that we have used to reach and engage diverse groups of members of the public, patients and those important to them  and also to recruit senior leads in the new structures within health and social care, especially Integrated Care Boards (ICBs) and their system partners, such as local authorities and voluntary, community, faith and social enterprise (VCFSE) organisations.
Collaborator Contribution	Our collaborators provided feedback to the methodology we have used, sharing their experiences and challenges in mobilizing evidence and engaging public and other stakeholders in their research.
Impact	Project application to ethics committee to establish a PPI panel, and drafting an editorial on importance of PPI in clinical research in LMIC, drawing on Brazil as an example.
Start Year	2023

Description	CAPES fellowship awarded to Dr Mevhibe Hocaoglu
Organisation	University Hospital of São Paulo
Country	Brazil
Sector	Hospitals
PI Contribution	Dr Hocaoglu presented the aims, objectives, methodology and outputs of the CovPall-Partners project to medical, nursing students, academics, researchers and clinical teams. The emphasis was on how co-design methodology informed by implementation theories could be put to practice to share information about the main evidence of the CovPall study, including how to best manage symptoms and transform the understanding and integration of palliative care evidence so more people can benefit in a long-lasting way. In a series of seminars, and workshops we discussed the importance of stakeholder engagement and co-design in maximizing the impact of palliative care evidence. We discussed the strategies that we have used to reach and engage diverse groups of members of the public, patients and those important to them  and also to recruit senior leads in the new structures within health and social care, especially Integrated Care Boards (ICBs) and their system partners, such as local authorities and voluntary, community, faith and social enterprise (VCFSE) organisations.
Collaborator Contribution	Our collaborators provided feedback to the methodology we have used, sharing their experiences and challenges in mobilizing evidence and engaging public and other stakeholders in their research.
Impact	Project application to ethics committee to establish a PPI panel, and drafting an editorial on importance of PPI in clinical research in LMIC, drawing on Brazil as an example.
Start Year	2023

Description	CAPES fellowship awarded to Dr Mevhibe Hocaoglu
Organisation	University of São Paulo Faculty of Medicine Clinics Hospital
Country	Brazil
Sector	Hospitals
PI Contribution	Dr Hocaoglu presented the aims, objectives, methodology and outputs of the CovPall-Partners project to medical, nursing students, academics, researchers and clinical teams. The emphasis was on how co-design methodology informed by implementation theories could be put to practice to share information about the main evidence of the CovPall study, including how to best manage symptoms and transform the understanding and integration of palliative care evidence so more people can benefit in a long-lasting way. In a series of seminars, and workshops we discussed the importance of stakeholder engagement and co-design in maximizing the impact of palliative care evidence. We discussed the strategies that we have used to reach and engage diverse groups of members of the public, patients and those important to them  and also to recruit senior leads in the new structures within health and social care, especially Integrated Care Boards (ICBs) and their system partners, such as local authorities and voluntary, community, faith and social enterprise (VCFSE) organisations.
Collaborator Contribution	Our collaborators provided feedback to the methodology we have used, sharing their experiences and challenges in mobilizing evidence and engaging public and other stakeholders in their research.
Impact	Project application to ethics committee to establish a PPI panel, and drafting an editorial on importance of PPI in clinical research in LMIC, drawing on Brazil as an example.
Start Year	2023

Description	CVD-COVID-UK / COVID-IMPACT Consortium
Organisation	British Heart Foundation (BHF)
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Feedback to the research proposal and the manuscript. Expertise in multi-morbidity , complexities, serious and life limiting illness, management of complex symptoms, patient-centric outcomes research and care, and public patient involvement and engagement.
Collaborator Contribution	The BHF COVID Consortium brings together researchers, clinicians, and data scientists to investigate the impact of COVID-19 on cardiovascular health. Partners contribute by sharing and analyzing large-scale datasets, providing clinical expertise, and supporting patient recruitment. They offer financial and logistical resources, enabling advanced research and biobanking. Their findings inform national and international guidelines, influencing policy and public health strategies. Through interdisciplinary collaboration, the consortium advances understanding of COVID-19-related cardiovascular risks, leading to improved patient care and health outcomes.
Impact	Johan H Thygesen, Huayu Zhang, Hanane Issa, Jinge Wu, Tuankasfee Hama, Ana-Caterina Phiho-Gomes, Tudor Groza, Sara Khalid, Thomas R Lumbers, Mevhibe Hocaoglu, Kamlesh Khunti, Rouven Priedon, Amitava Banerjee, Nikolas Pontikos, Chris Tomlinson, Ana Torralbo, Paul Taylor, Cathie Sudlow, Spiros Denaxas, Harry Hemingway, Honghan Wu, on behalf of the CVD-COVID-UK/COVID-IMPACT Consortium. Prevalence and demographics of 331 rare diseases and associated COVID-19-related mortality among 58 million individuals: a nationwide retrospective observational study. The Lancet Digital Health Volume 7, Issue 2, 2025, Pages e145-e156, ISSN 2589-7500, https://doi.org/10.1016/S2589-7500(24)00253-X.
Start Year	2022

Description	Collaboration with NHS Improvement London
Organisation	NHS London
Country	United Kingdom
Sector	Public
PI Contribution	wider dissemination and implementation and sharing of the findings in conferences and other settings, for policy makers and ICSs
Collaborator Contribution	sharing our materials and convening meetings
Impact	Internal reports for the team
Start Year	2021

Description	EAPC
Organisation	European Association for Palliative Care (EAPC)
Country	Italy
Sector	Public
PI Contribution	Delivery of blogs, evidence and information for services to improve care
Collaborator Contribution	raised awareness of our reserach and survey - sent it on to country partners
Impact	Series of blogs, raised awareness of survey and gained responses
Start Year	2020

Description	European Association of Palliative Care (EAPC)
Organisation	European Association for Palliative Care (EAPC)
Country	Italy
Sector	Public
PI Contribution	Writing blogs for the EAPC platform to disseminate findings from the CovPall survey.
Collaborator Contribution	Disseminating the CovPall survey to their networks to give clinicians the opportunity to share their experiences of delivering palliative care during the pandemic. Supporting recruitment. Dissemination of findings.
Impact	EAPC blogs Clinicians; healthcare professionals; researchers
Start Year	2021

Description	Hospice UK
Organisation	Hospice UK
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Contribution to ECHO meetings, and contribution by Hospice Uk to disseminating the work
Collaborator Contribution	Very active engagement in all aspects of the research to benefit palliative care and hospice. Rapid practice changes.
Impact	Multiple interdisciplinary Hospice UK Echo meets and ongoing plans
Start Year	2020

Description	Hospice UK
Organisation	Hospice UK
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Updating clinical teams
Collaborator Contribution	organising the zoom meetings and inviting us
Impact	Multidisciplinary, doctors, nurses, APHs, social work -
Start Year	2020

Description	Marie Curie
Organisation	Marie Curie
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Including findings from the CovPall study in the Better End of Life Report 2021.
Collaborator Contribution	Dissemination of findings in the Better End of Life Report 2021 and increased media coverage of findings through Marie Curie.
Impact	Better End of Life Report 2021.
Start Year	2021

Description	Scottish Partnership for Palliative Care
Organisation	Scottish Partnership for Palliative Care
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Dissemination of findings. Providing clinicians with the opportunity to share their experiences of delivering palliative care during the Covid-19 pandemic.
Collaborator Contribution	Dissemination of the CovPall survey among their networks to support recruitment in Scotland.
Impact	Clinicians; healthcare workers
Start Year	2021

Description	Sue Ryder
Organisation	Sue Ryder
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Dissemination of study findings. Opportunities for hospices to share their experiences of delivering palliative care during the Covid-19 pandemic.
Collaborator Contribution	Dissemination of the CovPall survey to Sue Ryder hospices to facilitate and support recruitment of the study.
Impact	Clinicians
Start Year	2021

Description	Together for Short Lives
Organisation	Together for Short Lives
Country	United Kingdom
Sector	Charity/Non Profit
PI Contribution	Dissemination of study findings. Opportunities for hospices to share their experiences of delivering palliative care during the Covid-19 pandemic.
Collaborator Contribution	Disseminating the survey among their networks to facilitate recruitment for the CovPall study.
Impact	Clinicians; healthcare professionals; charity sector
Start Year	2021

Description	University of Sheffield
Organisation	University of Sheffield
Country	United Kingdom
Sector	Academic/University
PI Contribution	Collaboration with Dr Sarah Mitchell at the University of Sheffield to support her to develop a survey of GP and primary care services response to the Covid-19 pandemic.
Collaborator Contribution	Expanding the CovPall study to GPs and primary care services. Dissemination of findings.
Impact	Research article. Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey. https://bjgpopen.org/content/5/4/BJGPO.2021.0095.full Researchers; GPs; primary care workers.
Start Year	2021

Description	'A year of fighting the racial inequality of COVID' Blog on EAPC Website
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Dr Sabrina Bajwah, Clinical Senior Lecturer, King's College London and Honorary Palliative Care Consultant at King's College Hospital, completed a blog post on the European Association of Palliative Care's website titled: 'A year of fighting the racial inequality of COVID', discussing the CovPall study and palliative and hospice care response to COVID-19.
Year(s) Of Engagement Activity	2021
URL	https://eapcnet.wordpress.com/2021/09/16/a-year-of-fighting-the-racial-inequality-of-covid/

Description	'Necessity is the mother of invention' - a news item on the findings on the CovPall study and models of care in palliative care during the pandemic
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item reports on the findings of the CovPall study and highlights the barriers to efficient working as being fear and anxiety of staff and patients, duplication of effort, information overload and lack of funding. The news item also highlighted that he enablers included collaborative teamwork, staff flexibility, pre-existing IT infrastructure and strong leadership. The CovPall emphasizes that specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, so-called 'frugal innovations' in response to COVID 19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resources.
Year(s) Of Engagement Activity	2021
URL	https://cicelysaundersinternational.org/necessity-is-the-mother-of-invention/

Description	'Role and Response of hospital palliative care during the COVID-19 Pandemic' Blog on EAPC Website
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Project members Prof Irene Higginson and Dr Mevhibe Hocaoglu completed a blog post on the European Association of Palliative Care's website titled: 'Role and Response of hospital palliative care during the COVID-19 Pandemic', with links to the CovPall and CovPall-Connect studies.
Year(s) Of Engagement Activity	2021
URL	https://eapcnet.wordpress.com/2021/04/21/role-and-response-of-hospital-palliative-care-during-the-co...

Description	'The challenges of caring for people dying from COVID-19' Blog on EAPC Website
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Project member Dr Adejoke Oluyase completed a blog post on the European Association of Palliative Care's website titled: 'The challenges of caring for people dying from COVID-19', discussing findings of the CovPall study.
Year(s) Of Engagement Activity	2021
URL	https://eapcnet.wordpress.com/2021/03/08/the-challenges-of-caring-for-people-dying-from-covid-19/

Description	16th Norwegian Conference in Palliative Care
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Invited presentation with CovPall and CovPall-Rehab data.
Year(s) Of Engagement Activity	2021

Description	A interview featured on King's Health Partners Learning Hub
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	I was featured in King's Health Partners' Newsletter for February 2025, which highlighted our work in patient-centred outcomes research. As a Postdoctoral Research Associate at the Cicely Saunders Institute, I am part of a dedicated team within the NIHR South London ARC Palliative and End of Life Care theme. In this news piece, I share the short film and an infographic that was co-produced to help improve palliative care communication. I also talk about our capacity-building projects and global collaborations aim to make care more inclusive and equitable. I am grateful to be part of a team that is working hard to advance understanding and practice in palliative care for the benefit of patients and communities.
Year(s) Of Engagement Activity	2025
URL	https://www.kingshealthpartners.org/latest/dr-mevhibe-hocaoglu-khpeople

Description	A media interview with the international press
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Public/other audiences
Results and Impact	7022 people has read the media interview to date (11.03.2024). In the interview covered the findings of the CovPall study, as well as patient-centric research.
Year(s) Of Engagement Activity	2021
URL	https://www.yeniduzen.com/herkes-yasaminin-sonuna-kadar-onemlidir-142254h.htm

Description	A presentation at Cicely Saunders International Annual lecture
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Presentation of key findings emerging from the CovPall study.
Year(s) Of Engagement Activity	2020

Description	A presentation at Hospice UK ECHO call 18/08/2020
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Over 100 health professionals from hospice and palliative care services attended an online ECHO call. This sparked questions and discussion around interpretation of findings.
Year(s) Of Engagement Activity	2020

Description	A presentation at National NIHR Applied Research Collaboration Palliative and End of Life Care Collaboration meetings/workshops
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Other audiences
Results and Impact	Over 200 delegates attended the National NIHR Applied Research Collaboration Palliative and End of Life Care Collaboration meetings. Professor I J Higginson presented CovPall study findings. This sparked questions and discussions around study findings.
Year(s) Of Engagement Activity	2020

Description	A presentation at National NIHR Applied Research Collaboration Palliative and End of Life Care Collaboration meetings/workshops
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Other audiences
Results and Impact	Over 200 delegates attended the National NIHR Applied Research Collaboration Palliative and End of Life Care Collaboration meetings. Professor I J Higginson presented CovPall study findings. This sparked questions and discussions around study findings.
Year(s) Of Engagement Activity	2020

Description	A presentation to the Department of Health and Social Care
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Policymakers/politicians
Results and Impact	Professor Sleeman presented the CovPall findings to the Department of Health and Social Care along with other Covid-19 research.
Year(s) Of Engagement Activity	2021

Description	A talk at Dept Health and Social Care
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	Invited by DHSC to present about research in Covid-19 / palliative care. Included data from several studies including CovPall, CovPall_Connect, CovPall_CareHomes, Marie Curie Better End of Life.
Year(s) Of Engagement Activity	2021

Description	ARC South London- Inside Research Seminar. Presentation of CovPall inequality data
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Patients, carers and/or patient groups
Results and Impact	Presentation to clinicians, patients, public and policy makers of CovPall inequalities data followed by breakout rooms with discussion
Year(s) Of Engagement Activity	2021

Description	ARC Website news story
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	News article on the publication of the Better-B trial paper in Lancet Respiratory Medicine.
Year(s) Of Engagement Activity	2024
URL	https://arc-sl.nihr.ac.uk/news-insights/latest-news/drugs-prescribed-label-may-do-more-harm-good

Description	Addressing racism in palliative care- keynote lecture at Hospice UK conference
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	key note lecture at Hospice UK conference. Audience comprised health professionals across all settings. The presentation sparked debate at the conference and on social media
Year(s) Of Engagement Activity	2021

Description	Advance care planning and COVID-19 - news item
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Policymakers/politicians
Results and Impact	The news item reports on the the findings of the CovPall study where COVID-19 has provided an opportunity to re-think advance care planning in which the starting point to any discussion is always the values and priorities of patients themselves. The news item highlights how the providers and policymakers need to urgently consider how high-quality advance care planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally.
Year(s) Of Engagement Activity	2021
URL	https://cicelysaundersinternational.org/advance-care-planning-and-covid-19/

Description	Animated film - Care Home Staff are Heroes Too - led to 5 policy recommendations
Form Of Engagement Activity	A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Public/other audiences
Results and Impact	Care Home Staff are Heroes Too is a short, animated film based on findings from the CovPall Care Homes study, led by Professor Katherine Sleeman and Professor Catherine Evans. The study examined how care homes responded to meet the rapidly increasing need for palliative and end-of-life care for care home residents during the pandemic. Senior staff in care homes completed an online survey followed by in-depth interviews. These findings were then discussed with care home staff, family carers, academics, and policy experts.
Year(s) Of Engagement Activity	2022
URL	https://youtu.be/IP5GQVneOrc?si=_ZFYfpz81gtz1Ynq

Description	Article: COVPALL research cited by World Health Organization
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	Newsletter article on how research under by the COVPall research team has been cited by the World Health Organisation in a policy document: Transforming the health and social equity landscape: promoting socially just and inclusive growth to improve resilience, solidarity and peace.
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/covpall-research-cited-by-world-health-organization/

Description	Article: Essential role of care home staff overlooked
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	Newsletter article on a short video made based on the findings from the CovPall Care Homes Study and also discussing ten policy recommendations across five areas (listed).
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/spring-newsletter-2023/

Description	Article: The CovPall Study
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	Newsletter article on the CovPall Study and quote from Integrated care board member
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/summer-newsletter-2023/

Description	BBC News Article including findings from CovPall
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Public/other audiences
Results and Impact	A BBC News article which included findings from the CovPall study as part of the Better End of Life programme.
Year(s) Of Engagement Activity	2021
URL	https://www.bbc.co.uk/news/uk-56669015

Description	Better commissioning for palliative care during and after Covid-19 - ARC SL Policy Event
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Policymakers/politicians
Results and Impact	Policy event on the CovPall and CovPall-Connect studies, discussing how we to promote better commissioning for palliative care during and following the pandemic. The presentations covered the response of palliative care during Covid-19 and reflections on palliative and end of life commissioning and clinical networks.
Year(s) Of Engagement Activity	2021
URL	https://www.arc-sl.nihr.ac.uk/events-training/forthcoming-events-training/better-commissioning-palli...

Description	Blog on the challenges of caring for people dying from covid-19
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	I prepared a blog for the European Association for Palliative Care (EAPC) on the challenges of caring for people dying from covid-19. This blog has reached national and international stakeholders through the EAPC platform.
Year(s) Of Engagement Activity	2021

Description	Blog on the role of palliative care and hospices in the covid-19 pandemic
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	We prepared a blog for the European Association for Palliative Care (EAPC) based on a rapid review on the role of palliative care and hospices in the covid-19 pandemic. Our blog reached national and international stakeholders and was in the top ten most-viewed posts published in the first six months of 2020, with more than 18,000 views.
Year(s) Of Engagement Activity	2020

Description	Breathelessness clinic for Integrated Respiratory Team/Pulmonary Rehabilitation King's College Hospital
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Patients, carers and/or patient groups
Results and Impact	Breathelessness clinical workshop held with patients in small groups on July 21, Aug 18, Sept 15 and Nov 17
Year(s) Of Engagement Activity	2023

Description	COVID policy in the UK: impact on ethnic minorities - news item
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Policymakers/politicians
Results and Impact	The news item reports on the findings of the CovPall study, which highlights that during the COVID-19 period, systemic steps, including equality impact assessments, are urgently needed to address inequity at the end of life for these patients and families. The news item also reports on the formal safeguards and mitigation against the negative impact of emergency policies on these groups, beyond a sole focus on individualised care, is urgently needed.
Year(s) Of Engagement Activity	2021
URL	https://cicelysaundersinternational.org/covid-policy-in-the-uk-impact-on-ethnic-minorities/

Description	COVID's Global Impact on Palliative Care: Creating Connections - IPOS Society Event
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Team Members Professor Irene Higginson and Dr Mevhibe Hocaoglu spoke at the IPOS Palliative Care Special Interest Group Education Sub-Committee special webinar and roundtable panel discussion on the impact of the global COVID-19 pandemic on the field of palliative care held Thursday, October 21. In this webinar, an international panel of Palliative Care experts presented the latest information about the pandemic and how it is impacting the health of individuals, families, communities and palliative care providers.
Year(s) Of Engagement Activity	2021
URL	https://www.ipos-society.org/News/10961158

Description	COVPALL research cited by World Health Organization (news item)
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	This news item, talks about how the film produced by the CovPall team has been cited by local as well as international organisations such as the WHO, about the findings of the CovPall studyon how the UK-wide policies may have disproportionately impacted people from ethnically diverse groups at the end of life during the Covid pandemic. The news item also talks about how the film, funded by the Medical Research Foundation, has been co-developed with a focus group of ethnically diverse patients and health professionals. The film harnesses patient, bereaved relatives' and health professionals' voice and experiences to improve understanding of: The unique needs of those from ethnically diverse groups Why it is important to address these needs The difference between equality and equity What we can do to deliver equitable care Palliative Care-shifting the focus from equality to equity was launched in June 2023 and has had >2,500 views to date with presentations at the European Palliative Care Congress and Hospice UK. Feedback comments have included "this film is incredibly powerful" and "this film was both challenging and uplifting, and should be watched by everyone working in healthcare". An e-learning on the national eELCA for NHS and social care health professionals e-learning platform with the film and 8 assessment questions was launched in July 2023. End-of-life Care for All (e-ELCA) programme In 2022, this research was cited in UK Parliament POSTnote on Palliative and end-of-life care. In 2023, this research was cited in World Health Organization policy: Transforming the health and social equity landscape: promoting socially just and inclusive growth to improve resilience, solidarity and peace.
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/covpall-research-cited-by-world-health-organization/

Description	CPRD COVID project Workshop
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Patients, carers and/or patient groups
Results and Impact	The workshop runs from 1:30 to 3:30 p.m. on June 29 via MS Team. The workshop is interactive and begin with a presentation from members of the project team, followed by small group discussions. The topic of small group discussion is related the challenges of accessing and delivering care to patients during the pandemic. Notes from the discussions are collated, which include interpretations of findings, recommendations, and possible areas of future inquiry.
Year(s) Of Engagement Activity	2023

Description	Charitably funded hospices and the challenges associated with the COVID-19 pandemic (news item )
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item reports on the findings of the CovPall study, on how the independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. It reports that the hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which affected their experiences during the COVID-19 pandemic. The news item highlights that the emergence of COVID-19 exposed the fragility of charitable hospice funding from the pre-lockdown era and highlighted how the current funding structure may be less suitable during emergency, pandemic conditions.
Year(s) Of Engagement Activity	2022
URL	https://cicelysaundersinternational.org/charitably-funded-hospices-and-the-challenges-associated-wit...

Description	Cicely Saunders Institute Knowledge Exchange Seminar
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Professional Practitioners
Results and Impact	The Cicely Saunders Institute (CSI) Knowledge Exchange Seminar is a half day event held in person at the CSI on Thursday 12th October 9.00-12.30, bringing together clinicians and researchers. The topic of the seminar is "Reach and Impact: the difference we make", where researchers who have recruited from KCH clinical services will provide an update of findings and their implications. There is also discussions around impact of research and equity.
Year(s) Of Engagement Activity	2023

Description	Co-design Workshop for Integrated Care Boards and their system partners
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	Co-design online workshop with senior leads in the new structures within health and social care, especially Integrated Care Boards (ICBs) and their system partners, such as local authorities and voluntary, community, faith and social enterprise (VCFSE) organisations. Following brief presentation of the CovPall and CovPall-Partners Studies, and presentation of key evidence from the CovPall study, rounds of discussion were held. The participants discussed the following questions: (1) How can we express the evidence so that it reaches the senior leads in the new structures within health and social care, especially Integrated Care Boards (ICBs) and their system partners, such as local authorities and voluntary, community, faith and social enterprise (VCFSE) organisations, so that underserved communities can benefit from palliative are? (2) Which formats /mediums would be most accessible and have the furthest reach? (3) Opportunities and Strategies to maximize reach of these messages specifically to underserved groups (4) How do we know that the evidence reached and made an impact in general and specifically for underserved groups? Key messages: (1) evidence of the and positive effects of being referred and treated by palliative care and we need to get people into palliative care much, much sooner and for a higher proportion of patients. (2) Integrated Care Partnerships (ICPs) are also very important, and the messages need to be framed in a nonclinical language, what is palliative care and why is it important? It is often forgotten that a lot of people just don't know what that is, what that means, it is assumed that people know it and they probably don't. There are communities completely missing out on not only what it is, but also how it could benefit them. You know where there's inequalities and there's, don't access page and care as readily as others, but evidence is hard to find. However, we also need to recognize that palliative care that is offered is not appropriate to everybody. (3) that palliative care was overlooked during the pandemic. (4) there is interest in the objective assessment of symptoms and how these correlates to blood oxygen saturation levels, and presenting this as well to convince the clinicians, if they are available. (5) it will be interesting to see if evidence on triggers such as breathlessness is in any way useful to say to people in the Community, particularly places like care homes and so on And the importance of translation of evidence beyond COVID to other end of life conditions: (1) Can the evidence on triggers for early referral (criteria) also help identify patients at risk of dying imminently or require more urgent attention in the care home settings as well as hospital specifically. (2) Can we utilize this evidence for the day-to-day management of palliative care patients irrespective of COVID learn from COVID because that gave us a cluster that gave us a cohort of patients to look at which was helpful. (3) People are dying and have a myriad of different conditions out there and the breathlessness and agitation relates to these different conditions as well. (4) Phrasing to say we found in COVID that breathlessness was a marker of likelihood of dying. (5) Can evidence on triggers for referral to PC be used more widely beyond COVID as a means of avoiding preventable admissions to hospitals and cost saving. (6) Could the triggers for referral agitation or breathlessness formula give frontline staff a warning to start really putting this one person on the palliative care pathway and and be clear about that (7) It is important to convey how universal these criteria are, that it is not specific to patients with COVID, and these are a combination of three triggers for patients with other end of life conditions, such as COPD, frailty. If there is evidence around that, it is important to present from a ICB perspective.
Year(s) Of Engagement Activity	2023

Description	Co-design Workshop for Members of the Public
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Patients, carers and/or patient groups
Results and Impact	PPI Co-design workshop was held online with 18 participants. The workshop duration was 2 hours. First there was a brief presentation of the CovPall and CovPall-Partners Studies and of the key evidence from the CovPall Study. This was followed by two small group facilitated discussions ( 6 members in each group) on: Discussion 1: (1) Re-phrasing the evidence so that it is clear to the target group* (2) Which formats/mediums we should present the key evidence, messages Discussion 2: (1) Opportunities and Strategies to maximize reach of these messages specifically to underserved groups (2) How do we know that the evidence reached and made an impact in general and specifically for underserved groups? The workshop ended with a final discussion on discussion on opportunities, strategies and evaluate impact by group representatives The key formats that PPI members thought would be most accessible were posters and short film. Key points the PPI members raised about the content of the resources are: 1. the need for a general introduction of palliative care would be very helpful. 2. The need for the resources to not overemphasize COVID as they thought people will not pay attention thinking they don't have COVID, and we will miss the opportunity to convey our message of the role of palliative care in complex symptom management.
Year(s) Of Engagement Activity	2023

Description	Consultant Online
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	News article on the publication of the Better-B trial paper in Lancet Respiratory Medicine.
Year(s) Of Engagement Activity	2024
URL	https://www.consultantlive.com/view/mirtazapine-fails-to-ease-breathlessness-in-new-study-despite-pr...

Description	Cyprus Forum
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Patients, carers and/or patient groups
Results and Impact	Over 1000 people attended the public engagement event. Dr Hocaoglu hosted a discussion on End of Life Care in a pandemic and post-pandemic period.
Year(s) Of Engagement Activity	2021

Description	Cyprus Newspaper Article
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Public/other audiences
Results and Impact	Dr Hocaoglu published a newspaper article in Cyprus entitled '...you matter to the end of your life.'
Year(s) Of Engagement Activity	2021
URL	https://www.yeniduzen.com/herkes-yasaminin-sonuna-kadar-onemlidir-142254h.htm

Description	Deep Dive Meeting with Integrated Care Boards
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We met with the leads of the regional ICS to present the palliative and end of life care evidence and gain insights into what parts of the evidence, in what format would be relevant to inform better care. In this meeting, the core project team met with ICS leads.
Year(s) Of Engagement Activity	2023

Description	EAPC blog on fighting racial inequality
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	blog on a year of fighting racial inequality of COVID with this piece of work highlighted
Year(s) Of Engagement Activity	2021
URL	https://eapcnet.wordpress.com/2021/09/16/a-year-of-fighting-the-racial-inequality-of-covid/

Description	ERS International Congress, 9 Sept 2024
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Presentation: 'Mirtazapine to alleviate severe breathlessness in patients with COPD or ILD: an international, multicentre, double-blind, randomised, placebo-controlled, phase 3 mixed-method trial (BETTER-B)'. 9 September 2024.
Year(s) Of Engagement Activity	2024

Description	Essential role of care home staff often overlooked during the pandemic
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Policymakers/politicians
Results and Impact	Its a newsletter article communicating findings from a study that examined how care homes responded to meet the rapidly increasing need for palliative and end-of-life care for care home residents during the pandemic (CovPall-Care home). Senior staff in care homes completed an online survey followed by in-depth interviews. These findings were then discussed with care home staff, family carers, academics, and policy experts. The news item shared the short film produced and communicated the ten policy recommendations, across five areas. These five areas are: 1. Valuing the role of care homes and care home staff. 2. Support for care home managers. 3. Workforce development, training, and support in delivering palliative and end-of-life care. 4. 'Spirit of partnership': Integration with primary and specialist palliative care. 5. Digital inclusivity.
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/essential-role-of-care-home-staff-often-overlooked-during-th...

Description	Hospice UK Clinical ECHO Network Session - (10/02/2021)
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	Prof Irene Higginson discussed the action plan for better palliative care and announced the CovPall-Connect study at Hospice UK Clinical ECHO Network Session.
Year(s) Of Engagement Activity	2021

Description	Hospice UK ECHO call 11/11/2020
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Hospice UK echo call attended by hospice and palliative care services, which sparked questions and discussions afterwards surrounding service level and patient level data from CovPall. This increased interest in the study.
Year(s) Of Engagement Activity	2020

Description	Interview with a journalist as an invitee to Cyprus Forum
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Industry/Business
Results and Impact	Fireside discussion: End of Life Care in a Pandemic and Post Pandemic Period - Mevhibe Hocaoglu, Postdoctoral Research Fellow/Associate, King's College London - Paris Demetriades, Journalist, Digital Tree The Cyprus Forum seeks to become a lever and catalyst for change through discussions and debate leading to commitments, actions, and ultimately outcomes that will improve and promote sustainable and socially responsible policy in Cyprus and the wider Eastern Mediterranean region. It brings together national and international political leaders, important figures from the public and the private sector, the media, academia, and civil society with the aim of initiating dialogue, exchanging ideas, and finding new and creative solutions to key areas of public policy. More info: cyprusforum.cy
Year(s) Of Engagement Activity	2021
URL	https://www.youtube.com/watch?v=dWV6awaQ2_Y&t=649s

Description	Jean Shanks Lecture 2020 of The Academy of Medical Sciences
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Prof J Higginson presented the 2020 Jean Shanks Lecture. The lecture considered key facets relevant to palliative care for the 21st century, including: the changing patterns of need, illnesses and symptoms, the challenges of living with and caring in uncertainly, the role of technologies, as well as recent and likely future discoveries and advances in palliative care that could improve the lives of those affected by serious and/or progressive illnesses.
Year(s) Of Engagement Activity	2020
URL	https://acmedsci.ac.uk/more/events/the-jean-shanks-lecture-2020

Description	Keech Hospice Care Masterclass - An Evaluation of Palliative Care's Response to the COVID-19 Pandemic
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	This Masterclass speaks to a group of palliative professionals across the Luton, Bedfordshire and Milton Keynes STP. This is a bi-monthly Masterclass aimed at senior professionals, including those working within CCGs, to explore a range of relevant topics.
Year(s) Of Engagement Activity	2023

Description	Kings' College London news story
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Media (as a channel to the public)
Results and Impact	News article on the findings from the BETTER-B trial published in the Lancet Respiratory Medicine. Also highlighting breathlessness resources and BETTER-B website for further information. 70 visits, 82 page views, 64 unique visitors, 28 returning visitors, 82.86% bounce rate (as of 16.10.24)
Year(s) Of Engagement Activity	2024
URL	https://www.kcl.ac.uk/news/drugs-prescribed-off-label-may-do-more-harm-than-good

Description	Kings' Health Partnership news story
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	News story on the BETTER-B trial results and breathlessness in general.
Year(s) Of Engagement Activity	2024
URL	https://www.kingshealthpartners.org/latest/mirtazapine-does-not-alleviate-severe-breathlessness?utm_...

Description	Knowledge Exchange Seminar on 'Translating patient-centric outcomes evidence to transform understanding of and access to palliative care: a co-design study'
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Knowledge Exchange Seminars update colleagues, both academic and clinical, on the most recent research activity. Dr Hocaoglu, on behalf of the CovPall-Partners and CovPall team, reported on the methodology, and findings of the co-design workshops.
Year(s) Of Engagement Activity	2024

Description	Lancaster University Public Lecture Series
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Public/other audiences
Results and Impact	Online public lecture to promote research that Lancaster University academics have been involved in to a wide, general audience.
Year(s) Of Engagement Activity	2020
URL	https://www.lancaster.ac.uk/events/public-lectures/

Description	MD Anderson Talk; 21 September 2024
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Presentation entitled: Better Treatments for Severe Breathlessness in Advanced Diseases.
Year(s) Of Engagement Activity	2024
URL	https://mdanderson.cloud-cme.com/course/courseoverview?P=5&EID=33390

Description	MedIndia coverage of the Better-B trial paper
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	News article on the BETTER-B trial paper and results of the trial.
Year(s) Of Engagement Activity	2024
URL	https://www.medindia.net/news/healthwatch/unintended-harm-off-label-prescriptions-of-antidepressants...

Description	Mirage News coverage of the BETTER-B trial paper and results of trial.
Form Of Engagement Activity	A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	News article highlighting the BETTER-B trial and trial results, and also giving information links on breathlessness. Mirage News is based in Australia.
Year(s) Of Engagement Activity	2024
URL	https://www.miragenews.com/drugs-prescribed-off-label-may-do-more-harm-1312444/

Description	New educational film addressing racial inequality in healthcare delivery
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Policymakers/politicians
Results and Impact	Newsletter article on the educational film addressing racial inequality in healthcare delivery. The CovPall study has shown that UK-wide policies may have disproportionately impacted people from ethnically diverse groups at the end of life during COVID-19. In addition, healthcare providers have been found to lack understanding of the difference between equal and equitable care, which can lead to distress and inequality in outcomes.
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/new-educational-film-addressing-racial-inequality-in-healthc...

Description	News Item - Quicker palliative care referrals needed to support severely ill COVID patients
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	Newsletter article on the CovPall study and the CovPall-Partners study, with comments from Integrated Care Board member.
Year(s) Of Engagement Activity	2023
URL	https://cicelysaundersinternational.org/winter-newsletter/

Description	News item introduces the Medical Research Council funded CovPall study
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item announces the launch of the project on the rapid evaluation of the COVID-19 pandemic response in palliative and end of life care (CovPall). This work is being supported by Cicely Saunders International, the Medical Research Council (ref MR/V012908/1) and the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, South London, now recommissioned as NIHR Applied Research Collaboration, South London. Project partners are EAPC, Marie Curie, Palliative care Outcome Scale Development Team, Together for Short Lives, Sue Ryder and Hospice UK.
Year(s) Of Engagement Activity	2020
URL	https://cicelysaundersinternational.org/medical-research-council-funds-covpall-study/

Description	News item on the palliative care needs better integration with health care systems
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item reported on the findings of the CovPall study, emphasizing that the major challenges included shortages: 48% reported shortages of Personal Protective Equipment (PPE); 40% staff shortages; 24% shortages of medicines; 14% shortages of other equipment. The news item emphasized that the charity managed services were more likely to experience shortages of PPE compared to publicly managed services. Services in the UK were more likely to experience staff shortages compared with those in the rest of Europe or elsewhere in the world.
Year(s) Of Engagement Activity	2021
URL	https://cicelysaundersinternational.org/palliative-care-needs-better-integration-with-health-care-sy...

Description	News item: Co-designed, co-developed and co-presented: reflections on an international palliative conference
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	The news covered the CovPall-Partners project poster presentation, which showcased efforts to co-design resources that enhance the integration and accessibility of palliative care for those who need it most through mobilization of patient-centric data. As part of this initiative, a short video and infographic were co-designed to address the needs of different ethnic groups and subgroups, ensuring that messages about managing symptoms such as breathlessness, agitation, and comorbidities are both culturally acceptable and accessible. This work was developed in collaboration with Patient and Public Involvement (PPI) members, Integrated Care Systems, and their local partners to ensure meaningful engagement and effective dissemination of information.
Year(s) Of Engagement Activity	2024
URL	https://arc-sl.nihr.ac.uk/news-insights/blog-and-commentary/co-designed-co-developed-and-co-presente...

Description	News item: King's College Launches CovPall-Partners to Boost Palliative Care Access
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Media (as a channel to the public)
Results and Impact	The news highlights CovPall-Partners as a key project that sought to bridge gaps in palliative care through community collaboration and co-design, ensuring culturally relevant resources for diverse populations.
Year(s) Of Engagement Activity	2024
URL	https://www.miragenews.com/kings-college-launches-covpall-partners-to-1260271/

Description	News item: • CovPall-Partners project to enhance palliative care integration and access | King's College London
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	The news item discussed CovPall-Partners as a key project that aimed to bridge gaps in palliative care by collaborating with communities and using co-design to create culturally relevant resources. Emphasizing Patient and Public Involvement (PPI), the project tailored resources-such as videos and infographics-to meet the needs of diverse ethnic groups, ensuring accessible messaging on managing symptoms like breathlessness. Sarah, Director of Public Health, highlighted the project's role in supporting Integrated Care Boards and commissioners, noting that these resources ensured that palliative care remained visible and prioritized, especially during crises. Dr Mev Hocaoglu further emphasized that cultural acceptability was crucial to effectively address complex symptoms and comorbidities across communities.
Year(s) Of Engagement Activity	2024
URL	https://www.kcl.ac.uk/news/covpall-partners-enhance-palliative-care-integration-access

Description	News: New Project at King's College London Targets Enhanced Palliative Care Access and Integration
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	The news highlights CovPall-Partners as a key project that sought to bridge gaps in palliative care through community collaboration and co-design, ensuring culturally relevant resources for diverse populations, showcasing its impact as a community-led, culturally sensitive approaches to palliative care.
Year(s) Of Engagement Activity	2024
URL	https://indiaeducationdiary.in/new-project-at-kings-college-london-targets-enhanced-palliative-care-...

Description	Open Seminar - Advance Care Planning in the context of COVID
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	Open seminar presenting findings from the CovPall study in relation to advance care planning, and related/emerging evidence on this topic
Year(s) Of Engagement Activity	2021

Description	Oral presentation at the 11th European Association of Palliative Care World Research Congress
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Findings from the first part of this project were presented as oral presentations at the 11th European Association of Palliative Care World Research Congress (October 2020). Please see Professor Irene J. Higginson's oral presentation on "Role and responses of palliative care during the COVID-19 pandemic and beyond" https://www.youtube.com/watch?v=NXsfB7jw8tU&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2?dex=1
Year(s) Of Engagement Activity	2020
URL	https://www.youtube.com/watch?v=NXsfB7jw8tU&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2&index=1

Description	Patient and Public Involvement and Engagement (PPIE) Workshop for CovPall Connect
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Patients, carers and/or patient groups
Results and Impact	The workshop focused on discussing and understanding what information should be collected on every individual to improve palliative, end of life care and bereavement. The findings are feeding into our CovPall-Connect work and influencing recommendations on national minimum dataset to be collected in palliative, end of life care and bereavement.
Year(s) Of Engagement Activity	2021

Description	Plenary presentation at Oceanic Palliative Care conference (Australia)
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Plenary presentation
Year(s) Of Engagement Activity	2021

Description	Policy brief on the challenges of caring for people dying from covid-19
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	Our team wrote a policy brief on the challenges of caring for people dying or seriously ill with COVID-19 and recommended actions in planning for a second pandemic wave (the CovPall Study). This policy brief was shared with key stakeholders in the UK to assist in planning for future pandemics.
Year(s) Of Engagement Activity	2020

Description	Poster presentation at EAPC conference in October 2020
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	I presented findings from our CovPall study on the impact of covid-19 on palliative and hospice care services at the 11th World Research Congress of the European Association for Palliative Care (EAPC) in October 2020. My presentation was well received and sparked questions and discussions on how the pandemic has affected staff working in palliative and hospice care services. My presentation won an award in its category.
Year(s) Of Engagement Activity	2020

Description	Presentation at Cicely Saunders Institute Knowledge Exchange Seminar/Event, titled 'Reach and Impact: the difference we make'
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Knowledge Exchange Seminars bring the clinical and academic teams together and serve as an interactive platform for applied research and building of partnerships to mobilise knowledge to practice. The event began with a welcome from Professor Katherine Sleeman, followed by an update on clinical academic training pathways presented by Professor Catherine Evans. The main session featured findings from four recent studies-SELF-BREATHE, Breathe Plus, OPTCARE Neuro, and CovPall-presented by researchers including Dr Charlie Reilly, Dr Lisa Brighton, Professor Irene Higginson, and Dr Mevhibe Hocaoglu, with insights from Public & Patient Involvement member Rashmi Kumar. In the event, Dr Sabrina Bajwah discussed equity in research impact, and Dr Lesley Williamson explored how evidence can influence policy. The event concluded with reflections from Dr Shaheen Khan from Guy's and St Thomas' NHS Foundation Trust, followed by a lunch networking session.
Year(s) Of Engagement Activity	2023

Description	Presentation at EAPC Congress 2022
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Conference presentation on an aspect of study findings.
Year(s) Of Engagement Activity	2022

Description	Presentation at ERS International Congress 2024
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Presentation as part of Alert Session: 'Mirtazapine to alleviate severe breathlessness in patients with COPD or ILD: an international, multicentre, double-blind, randomised, placebo-controlled, phase 3 mixed-method trial (BETTER-B)'.
Year(s) Of Engagement Activity	2024
URL	https://www.ersnet.org/congress-and-events/congress/

Description	Presentation at King's College Hospital Evidence Update
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Professional Practitioners
Results and Impact	Team members presented CovPall findings and plans for CovPall-Connect at King's College Hospital Evidence Update.
Year(s) Of Engagement Activity	2021

Description	Presentation at National Audit of Care at the End of Life (NACEL) steering group meeting
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Prof I J Higginson & Dr Mevhibe B Hocaolgu presented an overview of the project and findings on Advance Care Planning/Shortages and Innovations of hospice and palliative care services during the pandemic.
Year(s) Of Engagement Activity	2020

Description	Presentation at the CSI Seminar series
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Online seminar to present aspect of findings to a mixed audience of researchers, clinicians and policymakers.
Year(s) Of Engagement Activity	2022

Description	Presentation at the NIHR Consortium for Hospice and Community Research on 18th November 2020
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	This online webinar was organised by NIHR and Charities Consortium for Hospice and Community Research Conference and was targeted at anyone working in the Hospice, Palliative and End of Life Care sector including researchers, hospice staff and charities. Between 51 - 100 people attended this webinar from across the UK and I and Mev presented the findings of our CovPall study. This led to interesting questions and discussions about the impact of the pandemic on our palliative care population as well as those from minority ethnic groups.
Year(s) Of Engagement Activity	2020

Description	Presentation at the Supportive and Palliative Care Research Virtual Showcase on 23rd February 2021
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	This online event was organised by the NIHR Clinical Research Network West Midlands and was targeted at anyone working in the Hospice, Palliative and End of Life Care sector, patients and the public. Between 51 - 100 people attended this event from across the UK and I and Mev presented the findings of our CovPall study. This led to interesting questions and discussions about how volunteers in hospices have been impacted by the covid-19 pandemic.
Year(s) Of Engagement Activity	2021

Description	Presentation for ECHO call 12/21
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	presentation to palliative care health professionals on ECHO call- this generated discussions and questions on how to manage the palliative care needs of these patients
Year(s) Of Engagement Activity	2021

Description	Presentation on Intelligent Palliative Care Based on Patient-Reported Outcome Measures - Palliative Outcome Scale
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	On November 11, 2024, I delivered a presentation titled "Intelligenza artificiale e Sanità: le applicazioni in Cure Palliative" in Italy. The session, attended primarily by clinical professionals with simultaneous translation, focused on the integration of artificial intelligence with palliative care through patient-reported outcome measures (PROMs) and the Palliative Outcome Scale. I explained how PROMs, initially used in pharmacological research to assess treatment effects and quality of life, have evolved into vital tools for palliative care. These measures now help evaluate symptom management and inform clinical decisions in both early-phase trials and routine practice. I provided examples from pilot studies, demonstrating their application in assessing complex cases, guiding individual care planning, and supporting team communication. The presentation also explored how AI and machine learning can enhance the use of PROMs. I discussed methods to predict clinical status transitions and identify key symptoms that influence patient outcomes. I highlighted the potential of intelligent systems-such as digital therapeutics and wearable technology-to enable real-time symptom monitoring and prompt early interventions. Throughout, I stressed the importance of co-design and stakeholder engagement in developing these tools, ensuring they are culturally sensitive and user-friendly, especially for patients with multimorbidities. The session generated substantial follow-up discussion among the clinical audience, who expressed keen interest in further exploring AI-driven approaches to improve palliative care.
Year(s) Of Engagement Activity	2024
URL	https://www.ausl.re.it/intelligenza-artificiale-e-sanita-le-applicazioni-in-cure-palliative#:~:text=...

Description	Presentation: Mobilising evidence to transform understanding of and access to palliative care: Knowledge-to-Action Framework informed co-design study - The CovPall-Partners Study
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Dr. Mevhibe Hocaoglu was an invited speaker at The Institute for Clinical and Applied Health Research (ICAHR) Methods Hub Seminar Series on November 29, 2023, where she presented "Mobilising Evidence to Transform Understanding of and Access to Palliative Care: Knowledge-to-Action Framework Informed Co-Design Study - The CovPall-Partners Study." In this talk, she discussed how the Knowledge-to-Action Framework was applied in the CovPall-Partners Study to improve access to palliative care through co-designed interventions that address diverse community needs. ICAHR, based at Hull York Medical School, provides a multidisciplinary methodological resource supporting applied health research, covering everything from evidence synthesis to both quantitative and qualitative study designs.
Year(s) Of Engagement Activity	2023

Description	Presentation: Translating patient-centric outcomes evidence to transform understanding of and access to palliative care: a co-design study
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	We presented at the Researchers Exchange, Cicely Saunders Institute, King's College London (Higginson and Hocaoglu) - February 21, 2024 Title: Translating patient-centric outcomes evidence to transform understanding of and access to palliative care: a co-design study . The Researchers Exchange seminars are designed to share of learnings from the current projects with researchers in palliative care.
Year(s) Of Engagement Activity	2024

Description	Research Impact Event
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Researchers and clinicians attended a Research Impact Event at the Cicely Saunders Institute on 30/06/21. Researchers and a PPI member gave a presentation on the Covid 19 Pandemic Response. This sparked questions and discussion afterwards.
Year(s) Of Engagement Activity	2021
URL	http://www.professionalpalliativehub.com/research/events/%E2%80%98research-impact-covid-19-and-pande...

Description	Research Impact: COVID-19 and Pandemic Response in Palliative Care - Webinar 30 June 2021
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	AIIHPC hosted this webinar for colleagues on the island of Ireland involved in palliative care practice, research, policy and service provision. The webinar was delivered by Dr Mevihbe Hocaoglu and Rashmi Kumar on the COVPall study. This study was a rapid evaluation of the COVID-19 pandemic response in palliative and end of life care that included looking at national delivery, workforce and symptom management. The purpose of the webinar was to: (1) Understand the key findings from recent research on the COVID-19 pandemic response in palliative and end of life care Show how timely research can inform decision makers about importance of key aspects of palliative care service delivery during COVID-19 pandemic response (2) Identify future research priorities for palliative care in light of COVID-19 Dr Mevihbe Hocaoglu is a postdoctoral Research Associate at Cicely Saunders Institute, Kings College London working on patient centered outcome research programs and projects including the CovPall projects led by Prof Irene Higginson. She is also part of the Palliative care outcome scale development team. Rashmi Kumar is a member of the Patient and Public Involvement group who was involved in the CovPALL study.
Year(s) Of Engagement Activity	2021
URL	https://professionalpalliativehub.com/events/research-impact-covid-19-and-pandemic-response-in-palli...

Description	Roundtable Meeting Presentation and Discussion
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Policymakers/politicians
Results and Impact	On April 2, 2024, I participated in the second ICP-C/Can roundtable, a city-based partnership initiative that supports global efforts to improve access to quality, equitable cancer care. This roundtable brought together stakeholders from both the public and private sectors, aiming to transform the way cancer solutions are collectively designed, planned, and implemented at a city level. During my presentation, I emphasized strategies to foster collaboration among diverse partners, highlighting the importance of patient-centred approaches, equitable resource distribution, and culturally sensitive care models. The discussion also explored innovative methods for measuring impact and scaling up successful interventions. Overall, the session underscored the value of multidisciplinary collaboration in advancing cancer care solutions that address the specific needs of each city's population.
Year(s) Of Engagement Activity	2024
URL	https://citycancerchallenge.org/about/who-is-c-can/

Description	Royal College of Physicians of Edinburgh - keynote talk
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Talk at RCP Edinburgh on dying well during Covid
Year(s) Of Engagement Activity	2022

Description	Seminar - Capturing what matters to the patients living with life-limiting conditions and those important to them: Introduction to key properties of clinical outcome scales in health research and sharing of learnings from the Palliative care Outcome Scale (POS)
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Postgraduate students
Results and Impact	Construction, cultural adaptation, and validation of instruments for measures in health research, particular emphasis on measure developed for capturing patient-centric outcomes in COVID, and emphasis on CovPall, CovPall-Connect and CovPall-Partners findings.
Year(s) Of Engagement Activity	2023

Description	Seminar - Intelligent patient-centred care in advanced illnesses: Sharing of learnings from research with ageing persons and persons with advanced illness.
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	The talk focused on the how covid related outcomes were captured by patient centric measures, and used to inform clinical decisions, and inform clinical practice more broadly drawing on the CovPall, CovPall-connect and CovPall-Partners studies.
Year(s) Of Engagement Activity	2023

Description	Seminar - Introduction to key properties of clinical outcome scales in health research and sharing of learnings from the Palliative care Outcome Scale -
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Postgraduate students
Results and Impact	The talk focused on the use of patient-centric outcome measures in clinical settings, drawing examples from findings of the CovPall, CovPall-Connect and CovPall-Partners studies.
Year(s) Of Engagement Activity	2023

Description	Seminar - Mobilising evidence to transform understanding of and access to palliative care:Knowledge-to-Action Framework informed co-design studyThe CovPall-Partners Study
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Other audiences
Results and Impact	This was an invited seminar by the Institute for Clinical and Applied Health Research Seminar Series on 'Mobilising evidence to transform understanding of and access to palliative care:Knowledge-to-Action Framework informed co-design studyThe CovPall-Partners Study'. Dr Hocaoglu introduced the background and key concepts in Palliative care, Patient Centric Outcome Measures, POS Team, and the key study (The CovPall Study - evidence from patient-centric outcomes) and covered mobilising the patient-centric outcomes evidence using co-design methodology, The CovPall-Partners study.
Year(s) Of Engagement Activity	2023

Description	Seminar - Palliative Care's Response to the COVID-19 Pandemic: the CovPall Study
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Professional Practitioners
Results and Impact	The Cicely Saunders Institute (CSI) Knowledge Exchange Seminar, a half day event held in person at the CSI on 12th October 9.00-13.00 (including lunch). The topic of the seminar is "Reach and Impact: the difference we make", where researchers who have recruited from King's College Hospital clinical services will provide an update of findings and their implications. There will also be discussions around impact of research and equity. Please see the flyer below for more detail.
Year(s) Of Engagement Activity	2023

Description	South London ARC Symposium
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Professional Practitioners
Results and Impact	Team members presented on the CovPall and CovPall-Connect projects at the South London ARC Symposium.
Year(s) Of Engagement Activity	2021

Description	South London ARC newsletter item
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Project team members submitted a news item for the South London ARC newsletter, which is distributed nationally. The item discussed the ongoing CovPall study and introduced CovPall-Connect.
Year(s) Of Engagement Activity	2021
URL	http://www.arc-sl.nihr.ac.uk/research-and-implementation/our-research-areas/palliative-and-end-life-...

Description	Speaker at 27th Supportive & Palliative Care Clinical and Research Symposium, USA
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Gave keynote address and received the Suresh K. Reddy Lifetime Achievement Award Lecture for Outstanding Contributions in the Development of the Field of Palliative Care Presentation: Better Futures for Health and Care: The Role of Palliative Care. Also gave another presentation; Better Treatments for Severe Breathlessness in Advanced Diseases.
Year(s) Of Engagement Activity	2024
URL	https://mdanderson.cloud-cme.com/course/courseoverview?P=5&EID=33390

Description	Speaker at KCH What Matters Most Online Conference - 19 to 23 September 2022
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	Speak on the topic: Patient-centred outcomes-based healthcare - leading the way at KCH
Year(s) Of Engagement Activity	2022
URL	https://www.kingshealthpartners.org/assets/000/004/998/Programme_for_What_Matters_Most_blue_final_or...

Description	Talk at EAPC 2022
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	Invited talk at EAPC 2022
Year(s) Of Engagement Activity	2022

Description	Talk at Public Policy Exchange
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Policymakers/politicians
Results and Impact	Talk at policy conference, data on CovPall presented
Year(s) Of Engagement Activity	2022

Description	The challenges of working in palliative care during a pandemic (news item)
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item reports on the findings of the CovPall study on how the pandemic has affected palliative care health professionals. It highlights the effect of the pandemic on the wellbeing of palliative care healthcare professionals, and how organisations responded to this challenge has implications for healthcare systems generally, giving an insight into how healthcare staff and organisations can be better supported. The researchers conclude that organisational, structural and policy changes are urgently required to ensure quality of care and retention of staff.
Year(s) Of Engagement Activity	2022
URL	https://cicelysaundersinternational.org/the-challenges-of-working-in-palliative-care-during-a-pandem...

Description	The impact of COVID-19: differences between publicly managed services and hospices (news item)
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item reports findings from the CovPall study which is a multicentre, multinational observational study of specialist palliative care during the Covid-19 pandemic, highlighting differences between the busy-ness of different palliative services, and its impact on patient care. The news item emphasizes that being busier was associated with services that provided community care, and those that were publicly managed. This may indicate that service and funding models influence the ability of hospices and palliative care services to respond rapidly to changing needs and priorities. The study provides a starting point for further research, exploring the ability of hospice and palliative care services to respond rapidly to changing patient preferences and societal needs.
Year(s) Of Engagement Activity	2022
URL	https://cicelysaundersinternational.org/the-impact-of-covid-19-differences-between-publicly-managed-...

Description	The news item gives an update on the CovPall study
Form Of Engagement Activity	A magazine, newsletter or online publication
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Supporters
Results and Impact	The news item introduces the CovPall is a new project that is trying to understand more about how palliative care services and hospices are responding to the COVID-19 pandemic, the problems that services and patients and families/those affected by COVID-19 are facing, and how to best respond. The news item, reports on 'Why does this research matter?', 'What do we want to find out?', and also covers how to get involved.
Year(s) Of Engagement Activity	2020
URL	https://cicelysaundersinternational.org/covpall-update/

Description	The role of palliative care in the public health response to Covid-19 - CovPall Clinician Event
Form Of Engagement Activity	A formal working group, expert panel or dialogue
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Professional Practitioners
Results and Impact	The event highlighted the role of palliative care in the public health response to the Covid-19 pandemic by drawing on the work of the CovPall study. Presentations by team members Professor Irene Higginson and Professor Katherine Sleeman covered topics including: The challenges of caring for people dying with or from Covid-19 Advance care planning during the pandemic Service innovations Inequities in service response Role of volunteers during the pandemic Symptom management of patients dying with or from Covid Impact of the Covid-19 pandemic on staff wellbeing
Year(s) Of Engagement Activity	2021
URL	https://www.arc-sl.nihr.ac.uk/events-training/forthcoming-events-training/role-palliative-care-publi...

Description	Tweets about the Better-B trial results and trial paper.
Form Of Engagement Activity	Engagement focused website, blog or social media channel
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Media (as a channel to the public)
Results and Impact	3 tweets sent about the publication of the trial results. The tweets garnered the following response: As of 16 October: 1 comment, 38 re-tweets, 58 likes, and 3.8k engagements. As of 16 October: 9 re-tweets, 13 likes and 714 engagements. As of 16 October: 8 retweets, 12 likes and 748 engagements.
Year(s) Of Engagement Activity	2024

Description	Virtual Supportive & Palliative Care Research Showcase organised by NIHR CRN West Midlands
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Regional
Primary Audience	Professional Practitioners
Results and Impact	Prof Irene J Higginson presented CovPall study findings at Virtual Supportive & Palliative Care Research Showcase organised by NIHR CRN West Midlands.
Year(s) Of Engagement Activity	2021

Description	Webinar: Breathlessness in palliative and end of life care research
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	The webinar discussed on breathlessness in palliative and end-of-life care, chaired by Dr. Amy Gadoud. The session featured expert speakers discussing innovative approaches to managing refractory breathlessness. Professor Irene Higginson, OBE, presented insights from the BETTER-B programme, which explores improved treatments for breathlessness, including a clinical trial on mirtazapine. Professor Matthew Maddocks highlighted the role of Breathlessness Support Services, emphasizing non-pharmacological interventions and rehabilitation strategies. Professor Morag Farquhar shared findings from the Learning about Breathlessness (LaB) study, a web-based resource aimed at supporting family carers in managing breathlessness in patients. The webinar provided valuable insights into both pharmacological and non-pharmacological strategies to improve symptom management and enhance the quality of life for individuals facing breathlessness in palliative care.
Year(s) Of Engagement Activity	2024
URL	https://arc-sl.nihr.ac.uk/events-training/events-training/nihr-arc-palliative-and-end-life-care-nati...

Description	Workshop - Evaluating Care and preparing successful grant applications: Sharing of learnings &co-creating strategies and directions
Form Of Engagement Activity	Participation in an activity, workshop or similar
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	The workshop focused on the methodologies (co-design, deep-dive, evaluation, PPI and stakeholder engagement) in the CovPall-Partners study. The workshop discussed how PPI involvement is critical in identifying priority areas for research, importance of PPI engagement in re-framing/rephrasing evidence and complex concepts, and how co-desgin/co-creating approaches (process theories) can be used to mobilize palliative care evidence and knowledge, so that care is available and accessible to all who need it. The workshop used the CovPall-Partners, CovPall and CovPall Connect studies as examples.
Year(s) Of Engagement Activity	2023

Description	educational film premiered at European Palliative Care Conference in Rotterdam
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	• The film was premiered at the European Palliative Care Conference in Rotterdam in June 2022 presenting to >100 individuals working within palliative care from across Europe
Year(s) Of Engagement Activity	2022

Description	educational film presented at Hospice UK conference 2023
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Third sector organisations
Results and Impact	• The film was presented at the Hospice UK conference where it sparked conversation about racial inequality
Year(s) Of Engagement Activity	2023

Description	educational film presented at South London Integrated Care Board
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	Local
Primary Audience	Policymakers/politicians
Results and Impact	• The film was also presented at the South London Integrated Care Board meeting with workshop-100 attendees from multi-disciplinary settings
Year(s) Of Engagement Activity	2023

Description	racial inequality and palliative care keynote lecture at Marie Curie research conference
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	National
Primary Audience	Professional Practitioners
Results and Impact	key note lecture at Marie Curie Research conference. Audience comprised health professionals across all settings. The presentation sparked debate at the conference and on social media
Year(s) Of Engagement Activity	2022

Description	• Keynote address and received the Suresh K. Reddy Lifetime Achievement Award Lecture for Outstanding Contributions in the Development of the Field of Palliative Care Presentation at 27th Supportive & Palliative Care Clinical and Research Symposium, USA. (Professor Irene J Higginson), 20 September 2024
Form Of Engagement Activity	A talk or presentation
Part Of Official Scheme?	No
Geographic Reach	International
Primary Audience	Professional Practitioners
Results and Impact	• Keynote address and received the Suresh K. Reddy Lifetime Achievement Award Lecture for Outstanding Contributions in the Development of the Field of Palliative Care Presentation at 27th Supportive & Palliative Care Clinical and Research Symposium, USA. (Professor Irene J Higginson), 20 September 2024 Title: Better Futures for Health and Care: The Role of Palliative Care
Year(s) Of Engagement Activity	2024