Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management (CovPall)
Lead Research Organisation:
King's College London
Department Name: Palliative Care and Rehabilitation
Abstract
The COVID-19 pandemic is placing an unprecedented strain on health care services. Although many people survive, an estimated 1 to 4% die from this disease. There are more than 10,000 UK deaths from COVID-19, with numbers escalating.
Many of the symptoms, such as breathlessness, fever, agitation and pain, are very distressing. But in this new disease these symptoms are not well understood. Palliative care services are adapting rapidly to this situation, but in different ways, not knowing what is best.
This research aims to rapidly evaluate the palliative care response in COVID-19 to improve care now and in the future.
There are two main components, called work packages (WPs), to the research.
WP1 surveys, UK wide, palliative care medical or nursing leads, about their changes in practice, how they deploy the workforce, volunteers and technology, their innovations and challenges.
WP2 collects data about patients' symptoms, how they change over time, and the effects of treatments.
We collect this information immediately and quickly (phase I), and then repeat the data collection after 6-8 weeks (phase II) to understand how practice is changing.
We involve patients, families, the public, policy makers and services in all stages of the research. We release early findings, to help catalyse an effective response.
Many of the symptoms, such as breathlessness, fever, agitation and pain, are very distressing. But in this new disease these symptoms are not well understood. Palliative care services are adapting rapidly to this situation, but in different ways, not knowing what is best.
This research aims to rapidly evaluate the palliative care response in COVID-19 to improve care now and in the future.
There are two main components, called work packages (WPs), to the research.
WP1 surveys, UK wide, palliative care medical or nursing leads, about their changes in practice, how they deploy the workforce, volunteers and technology, their innovations and challenges.
WP2 collects data about patients' symptoms, how they change over time, and the effects of treatments.
We collect this information immediately and quickly (phase I), and then repeat the data collection after 6-8 weeks (phase II) to understand how practice is changing.
We involve patients, families, the public, policy makers and services in all stages of the research. We release early findings, to help catalyse an effective response.
Technical Summary
COVID-19 has an estimated case fatality ratio between 1-4%; higher among older people and those with underlying illnesses. Information is urgently needed to evaluate the evolving palliative and end of life care response. This knowledge is vital to optimise health care delivery, and to manage symptoms, as no evidence currently exists.
This research aims to rapidly and robustly evaluate the UK palliative care and end of life care response in COVID-19 in terms of services, workforce and symptom management to optimise patient and family care.
Design: Rapid, multicentre observational study, comprising two main work packages.
WP1. Online survey of clinical leads of UK community, hospital and inpatient palliative care and hospice services, to map and understand their workforce and volunteer deployment, innovations, challenges and clinical practices in response to COVID-19.
WP2. Prospective cohort study of the characteristics, symptoms and clinical care experienced by patients within palliative care and hospice services (selected purposively from those responding to WP1), to understand the prevalence and trajectory of symptoms, treatments received, and their effects (benefits, any harms).
Both WPs run initially (phase I) and are repeated (phase II) after 6-8 weeks. This examines practice changes, successes and difficulties. In addition, in phase II we integrate case studies of successful innovations and challenges, that provide in-depth insights.
Active policy, patient and public engagement is incorporated in all phases of the research, including with charitable and statutory bodies, NHS England, Public Health England, and our NIHR/ARC supported virtual Patient and Public Palliative Care forum.
This research aims to rapidly and robustly evaluate the UK palliative care and end of life care response in COVID-19 in terms of services, workforce and symptom management to optimise patient and family care.
Design: Rapid, multicentre observational study, comprising two main work packages.
WP1. Online survey of clinical leads of UK community, hospital and inpatient palliative care and hospice services, to map and understand their workforce and volunteer deployment, innovations, challenges and clinical practices in response to COVID-19.
WP2. Prospective cohort study of the characteristics, symptoms and clinical care experienced by patients within palliative care and hospice services (selected purposively from those responding to WP1), to understand the prevalence and trajectory of symptoms, treatments received, and their effects (benefits, any harms).
Both WPs run initially (phase I) and are repeated (phase II) after 6-8 weeks. This examines practice changes, successes and difficulties. In addition, in phase II we integrate case studies of successful innovations and challenges, that provide in-depth insights.
Active policy, patient and public engagement is incorporated in all phases of the research, including with charitable and statutory bodies, NHS England, Public Health England, and our NIHR/ARC supported virtual Patient and Public Palliative Care forum.
Organisations
- King's College London (Lead Research Organisation)
- National Institute for Health Research (Co-funder)
- Scottish Partnership for Palliative Care (Collaboration)
- Sao Paulo State University (Collaboration)
- Hospice UK (Collaboration)
- NHS London (Collaboration)
- Together for Short Lives (Collaboration)
- MARIE CURIE (Collaboration)
- University Hospital of São Paulo (Collaboration)
- Sue Ryder (Collaboration)
- University of São Paulo Faculty of Medicine Clinics Hospital (Collaboration)
- All Ireland Institute of Hospice and Palliative Care (Collaboration)
- European Association for Palliative Care (EAPC) (Collaboration)
- University of Sheffield (Collaboration)
Publications
Bajwah S
(2020)
Managing the supportive care needs of those affected by COVID-19.
in The European respiratory journal
Bajwah S
(2021)
Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study.
in BMJ supportive & palliative care
Blum D
(2023)
Top Ten Tips Palliative Care Clinicians Should Know About Cachexia.
in Journal of palliative medicine
Bone AE
(2020)
Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications.
in Palliative medicine
Boufkhed S
(2020)
Preparedness of African Palliative Care Services to Respond to the COVID-19 Pandemic: A Rapid Assessment.
in Journal of pain and symptom management
| 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 | CovPall is a multinational observational study of specialist palliative services response to the COVID-19 pandemic. Two main work packages collecting data at service level (from 458 services, 277 UK) and patient level data (572 patients). Data from 458 palliative and end-of-life care services in the UK and across the world showed: •Most services were overwhelmed by people with COVID, also looked after their existing patients •Community and hospital palliative care teams had a large surge in patients - 91% of services changed how they worked •The importance and role of palliative care in the pandemic response, particularly for charity managed services and those providing care in people's homes Key messages: •Palliative care services supported people during the COVID pandemic •Palliative care developed 'frugal innovations' to care for more people •Improvements were seen even when patients had less than 2 days in care •Moderate to severe breathlessness, agitation and more than one pre-existing health condition as potential triggers to prioritise future referrals •Practice changes such as equality impact assessments could address inequity •The impact of COVID on individuals was severe •Patients deteriorated very quickly; within 48 hours of the first assessment, more than 50% of the patients referred had died •Differences in symptom severity between final and initial assessments, shows improvement of breathlessness, pain and anxiety The CovPall Study influenced policy, planning and practice for the future epidemics informing key reports (for example Marie Curie reports) and key discussions (parliamentary, NHS England), highlighting palliative care's critical role in an effective and integrated pandemic response to meet public needs and priorities. |
| Exploitation Route | Our project contributed to the research ecosystem catalysing additional CovPall studies to improve and boost findings in care homes (CovPall Care Homes), national data linkage (CovPall Connect), and rehabilitation (CovPall Rehab). Most importantly, it has demonstrated the enthusiasm to share learnings and contribute to understanding of patient-centered outcomes, even at the toughest of times. •Further studies could investigate how palliative care evidence generated by the many outputs from the CovPall project could be integrated into policy; in part, because palliative care is often misunderstood and its role is unrecognised. •An improved understanding of modern palliative care, and its application in different disciplines, could benefit people with different or multiple health conditions, often with complex needs, serious illness and/or symptoms, supporting those close to the patient, such as the family members or friends. •Further work could be undertaken to integrate referral to palliative care services into care pathways, avoiding late or missed referrals, or a failure to use appropriate treatments that could alleviate symptoms. Currently we have launched with the Medical Research Foundation a project called CovPall Partners to transform the key evidence generated from CovPall. This aims to transform the understanding and integration of palliative care evidence so more people can benefit in a long-lasting way. We will co-design and share information about the main evidence of the CovPall study, including how to best manage symptoms. |
| Sectors | Communities and Social Services/Policy Healthcare Government Democracy and Justice |
| URL | https://www.kcl.ac.uk/research/covpall |
| Description | The CovPall study had non-academic impact. For example, one of the key outputs showed that UK-wide policies may have disproportionately impacted people from ethnically diverse groups at the end of life during the Covid pandemic, and that, 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. 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), which is 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. Also, the lead author of the output, Dr Sabrina Bajwah and with the CovPall Study team developed an educational film for everyone working in palliative and end of life care, 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 and what we can do to deliver equitable care. This film reached wide audiences, including non-academic audiences and has had >2,500 views to date with presentations at the European Palliative Care Congress and Hospice UK. The film also has been included as an e-learning resources on 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. (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.) |
| 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 | 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 | 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 | 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 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: 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 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 | 02/2024 |
| 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 | 01/2024 |
| Description | Clinical Doctoral Research Fellowship (Supervisor) |
| Amount | £269,174 (GBP) |
| Funding ID | ICA-CDRF-2015-01-008 |
| Organisation | National Institute for Health 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 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 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 | Private |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 06/2021 |
| 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 | 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 | 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 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 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 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 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 Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2015 |
| End | 12/2018 |
| Description | NIHR Doctoral Research Fellowship (Supervisor) |
| Amount | £240,074 (GBP) |
| Funding ID | DRF-2014-07-089 |
| Organisation | National Institute for Health Research |
| Department | NIHR Fellowship Programme |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2015 |
| End | 08/2018 |
| Description | NIHR Research for Patient Benefit |
| Amount | £287,403 (GBP) |
| Funding ID | NIHR201060 |
| Organisation | National Institute for Health 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 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 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 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 | Private |
| 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 |
| 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 | 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 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 | 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 | 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 | 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 | 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 | 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 | 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 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 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 | 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 | 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 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 | 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 | 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 |