Methods for evaluating service delivery models for end of life care (EoLC): development of best practice guidance

Lead Research Organisation: King's College London
Department Name: Cancer Studies

Abstract

People are living longer but it is inevitable that we will all still die. One result of living longer, is that we are more likely to have symptoms, physical disabilities and illnesses later in life. These problems are likely to need treatment and support ? sometimes for several weeks and sometimes a year or more. The problems often get worse as the very end of life approaches. The government?s End of Life Care Strategy, published in July 2008, sets out a programme to improve care at this time. But its biggest drawback is the lack of knowledge about what services work best and at what cost. The problem is that conducting research into how services work for people at the end of life is difficult and has not been sufficiently developed. This project addresses this gap by producing guidance on the best practices in research into end of life care especially of services. The research will take place over 2 years and brings together experts from 4 world-class universities. They will find, assess and bring together research experiences and will consult with policy makers, research ethics committees, research funders, health care professionals and patients, relatives and carers. For areas of particular difficulty they will hold ?think tank? workshops bringing the top brains to help to find the best solutions. The project will produce guidance on the best ways to undertake research into services for people at the end of life and case examples so that in the future we can have the best in care.

Technical Summary

Background: Research into End of Life Care (EoLC) services is patchy and faces complex difficulties. Guidance on best practice is needed so that timely evaluation can help optimal services be developed to improve care for patients and families.

Aims: to identify, appraise and synthesise ?best practice? methods for the evaluation of EoLC, particularly focussing on complex service-delivery interventions and reconfigurations.
The objectives are to:
1. Critically review the current methods used in evaluation research in EoLC considering the full range of issues
2. Characterise the different care settings, organisational contexts, and patient groups where end-of-life research may be conducted and consider the implications of these for different methodological approaches;
3. Identify practical, ethical, legal and methodological issues pertinent to EoLC research
4. Appraise the needs and views of key stakeholders, including policy-makers, research ethics committees, research funders and other regulators of research, health care professionals and patients, relatives and carers
5. Evaluate potential solutions to barriers created by the issues identified and
6. Synthesise the findings of the review and stakeholder consultation to develop guidelines for undertaking evaluation research in EoLC.


Methods:
The project uses a combination of methods in parallel to deliver the above aims and objectives. Initial literature scoping will clarify the questions for the reviews and consultation. Then literature appraisal and evidence synthesis will be used to address aims 1,2,3 and 4, combined with consultation with stakeholders, using the Transparent Expert Consultation (TEC) technique for aim 5. This process involves web-based consultation followed by face to face consultation similar to the Nominal Group Technique. The findings from appraisal and consultation will be integrated to provide initial guidance. Then in year 2 of the project a series of methodological ?think tank? workshops will be held. These will be similar to the retreats organised in the development of MRC-Guideline for Developing and Evaluating Complex Interventions (GDECI), drawing together experts to identify and evaluate potential solutions to barriers in areas of contention and difficulty. All aspects of the project will then be synthesised into a final guideline. The development, evaluation and implementation components of MRC-GDECI will provide a structure for the reviews, consultation and synthesis across the whole project.

The final guidance will be structured in a similar way to that of the MRC-GDECI, including case studies of best practice. Consumers and the public will be involved in the consultation and through activities already established by the applicants.

Publications

10 25 50

 
Description 107 students enroled on the Elearning course: Developing & Evaluating Complex interventions (MORECare Statement)
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description 20th International Congress on Palliative Care workshop: Best practices in measurement for service development and evaluation
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Citation in BMJ blog - on how mixed methods research may be published
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Citation in EAPC White Paper on outcome measurement in palliative care
Geographic Reach Europe 
Policy Influence Type Citation in other policy documents
 
Description Citation in NHS improving quality: Considerations on assurance and quality improvement for care in the last days of life in acute hospitals
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL http://www.nhsiq.nhs.uk/media/2477322/consideration_on_quality_assurance.pdf
 
Description Citation in key text book: Oxford Textbook of Palliative Medicine
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Citation in key textbook: Textbook of Palliative Medicine and Supportive Care, Second Edition
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Citation in strategy for palliative care for the Republic and Canton of Ticino (Switzerland)
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Citation in other policy documents
URL http://www4.ti.ch/fileadmin/DSS/DSP/UMC/malattie_infettive/Strategia_cantonale_di_cure_palliative_ve...
 
Description Citation of MORECare statement in more than 50 peer reviewed scientific articles
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description European Palliative Care Academy (EUPCA) 2013
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description European Palliative Care Academy (EUPCA) 2014
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description European Palliative Care Academy (EUPCA) 2016
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Influence on systematic review: The economic evidence for advance care planning: systematic review of evidence
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in systematic reviews
URL http://pmj.sagepub.com/content/early/2015/06/08/0269216315586659.abstract
 
Description Influenced training of practitioners or researchers - KCL teaching in the MSc in Palliative Care King's College London 2018 MORECare Elearning (2019)
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description KCL teaching in the MSc in Palliative Care King's College London 2012. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description KCL teaching in the MSc in Palliative Care King's College London 2015. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description KCL teaching in the MSc in Palliative Care King's College London 2016. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description KCL teaching in the MSc in Palliative Care King's College London 2016. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact tbc
 
Description KCL teaching in the MSc in Palliative Care King's College London 2016. MORECare Elearning
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Students learn how to develop and evaluate palliative care interventions. This will put them in a position to ultimately provide better care to the patient and their family.
 
Description KCL teaching in the MSc in Palliative Care King's College London 2018 MORECare Elearning
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Students learn how to develop and evaluate palliative care interventions. This will put them in a position to ultimately provide better care to the patient and their family.
 
Description King's College London, teaching in the MSc in Palliative Care 2013. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description King's College London, teaching in the MSc in Palliative Care 2014. Evans, Complex interventions
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Lancaster University PhD Summer School. Todd
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Lancaster University Seminar MORECare (Live + Webinar)
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.lancaster.ac.uk/shm/research/ioelc/groups/archive.php
 
Description MORCare Statement listed on the NCRI Grantsmanship Gateway (as a tool to improve generation of high quality biomedical, health and social care research proposals)
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
 
Description NCRI 2012 Master class on research methods in palliative and end-of-life care
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Open Seminar Series (Strategic lead): ' Guidance on how to develop complex interventions to improve health and healthcare' by Professor Alicia O'Cathain - 27 November 2019
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Public health England Research Summit (Palliative and End of Life Care)
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Teaching on MSc in Palliative Care
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Irene provides educational support by teaching on the MSc in Palliative Care at the Cicely Saunders Institute. In 2019-20 she has taught on the Research Methods & Statistics and Applied Epidemiology Modules. Irene currently also supervisors 4 MSc students.
 
Description Workshop at 12th Australian Palliative Care Conference
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description (C-POS) - Children's Palliative care Outcome Scale
Amount € 1,799,820 (EUR)
Funding ID 772635 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 09/2018 
End 02/2023
 
Description Advancing Research Outreach in Palliative Care
Amount £266,000 (GBP)
Organisation Cicely Saunders International 
Sector Charity/Non Profit
Country United Kingdom
Start 02/2019 
End 02/2021
 
Description Evidence into practice
Amount £48,000 (GBP)
Organisation The Health Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2017 
End 07/2018
 
Description Health Education England (Health Innovation Network)
Amount £10,000 (GBP)
Organisation Health Education England 
Sector Public
Country United Kingdom
Start 11/2018 
End 11/2019
 
Description Horizon2020: SC1-BHC-23-2018: Novel patient-centred approaches for survivorship, palliation and/or end of life care
Amount € 3,769,999 (EUR)
Funding ID 825319 
Organisation European Commission H2020 
Sector Public
Country Belgium
Start 01/2019 
End 12/2022
 
Description Improving the quality of care for stroke survivors in care homes
Amount £292,728 (GBP)
Funding ID R537/0217 
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 02/2018 
End 01/2020
 
Description MRC ALEXANDER FLEMING DISSEMINATION SCHEME
Amount £29,300 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 11/2013 
End 11/2014
 
Description Marie Curie CR UK
Amount £121,000 (GBP)
Organisation Cancer Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2011 
End 08/2013
 
Description NIHR Clinician Scientist
Amount £794,133 (GBP)
Organisation National Institute for Health Research 
Department NIHR Fellowship Programme
Sector Public
Country United Kingdom
Start 03/2016 
End 03/2021
 
Description NIHR SSCR Methods Review
Amount £5,000 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 02/2012 
End 09/2012
 
Description NIHR Senior Clinical Lecturer
Amount £400,000 (GBP)
Funding ID SCL-ICA- 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 06/2016 
End 05/2021
 
Description National Institute for Health Research - health services and delivery research - Guidecare services
Amount £302,878 (GBP)
Funding ID 14/19/22 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 07/2015 
End 03/2018
 
Description Project GlobalCARE
Amount £542,535 (GBP)
Organisation Atlantic Philanthropies 
Sector Private
Country Ireland
Start 05/2014 
End 05/2017
 
Description World Health Organisation. Commissioned call for rapid review of service delivery models for older people at the end-of-life that maximise quality of life
Amount £32,457 (GBP)
Organisation World Health Organization (WHO) 
Sector Public
Country Global
Start  
 
Title Decision support tool 
Description Decision support tool for managing 4 complex symptoms 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2015 
Provided To Others? Yes  
Impact Highest downloads from free website. Used to aid practice 
URL http://pos-pal.org/maix/resources.php
 
Title Integrated Palliative care Outcome Scale 
Description Integrated Outcome measure building on work of POS 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2015 
Provided To Others? Yes  
Impact Integration into clinical practice to improve care 
URL http://pos-pal.org/maix/ipos_in_english.php
 
Title Integrated palliative care outcome scale - further refinement 
Description Integrated version of the palliative care outcome scale - further refined 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2017 
Provided To Others? Yes  
Impact improved clinical assessment of patients in advanced stages of illness 
URL https://pos-pal.org/maix/ipos_in_english.php
 
Title Integrated palliative care outcome scale for use in dementia 
Description Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale-Symptom and Integrated Palliative care Outcome Scale.A short staff administered scale to better assess concerns in dementia 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2017 
Provided To Others? Yes  
Impact Better care for people with dementia in case homes 
URL https://pos-pal.org/maix/ipos-dem.php
 
Title MORECARE Statement on developing and evaluating EoLC services and interventions 
Description The MORECare statement provides 36 practical best practice solutions for research in EoLC to improve study quality, setting a standard for research in the future. These are relevant to those undertaking research, research funders, ethical committees and editors. 
Type Of Material Improvements to research infrastructure 
Year Produced 2011 
Provided To Others? Yes  
Impact MORECare Statement paper is complete and in the process of submission to PLOS ONE. The Statement was launched at the EAPC 2012, and presented at the NCRI 2012 in the MOREcare Masterclass on Research Methods in Palliative and End of Life Care. 
 
Title POS- E 
Description Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2017 
Provided To Others? Yes  
Impact Improved ways to assess health economic issues in people with advanced illness. We derived a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care. 
URL https://pos-pal.org/maix/pos-in-english.php
 
Title Palliative care Outcome Scale (POS) launched on line 
Description Short easy to use outcome measure for palliative care, launched on-line to provide free downloadable format with access to support use and interpretation. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2011 
Provided To Others? Yes  
Impact POS website launched in 2011 to provide open access to the outcome measure with standardised information and guidance. More than 4000 health professionals, carers have signed up and the site has an average of more than 3000 visits a month. The work is linked to an EU funded project on outcome measures (PRISMA) and collaboration with the MORECare group's work on outcome measurement in EoLC. 
URL http://pos-pal.org
 
Title The MyPOS 
Description myeloma-specific QOL questionnaire designed specifically for use in the clinical setting - the MyPOS 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2017 
Provided To Others? Yes  
Impact The MyPOS aids clinical assessment of patients and families during myeloma care and treatment. We have also found it valid in patients with follicular lymphoma - Eur J Haematol. 2017 May;98(5):508-516. doi: 10.1111/ejh.12864. Epub 2017 Mar 9. 
URL https://pos-pal.org/maix/mypos.php
 
Title the Italian palliative care outcome scale 
Description The Italian version of the Palliative care Outcome Scale (POS), plus data on predictors of change after the transition to palliative care. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2017 
Provided To Others? Yes  
Impact Improved palliative care in Italy 
URL https://pos-pal.org/maix/pos-translations.php#italian
 
Description COMPASS and CeCo NCRI collaboratives 
Organisation University of Manchester
Department School of Medicine Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution Closer working between COMPASS and Ceco, both palliative care research networks within the NCRI
Collaborator Contribution Furthering the work of the respective palliative care research networks by developing and disseminating findings on best research practice in palliative and EoLC
Impact Palliative care specific networks within the NCRI now closed. Close working continues with the NCRI on furthering the field of research on palliative and EoLC.
Start Year 2009
 
Description Collaboration PRISMA EU project and EAPC Taskforce on outcome measurement 
Organisation European Association for Palliative Care (EAPC)
Department Taskforce on Outcome Measurement in Palliative Care
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution MORECare, PRISMA and EAPC Taskforce on outcome measurement held a joint international outcomes workshop at the EAPC 2012 conference. The workshop aimed to further the work of the EU PRISMA project on outcome measurement and the EAPC Taskforce by generating recommendations on best research practice in selecting and using outcome measures in EoLC, followed by an on-line consensus survey.
Collaborator Contribution Joint international workshop on outcome measurement in EoLC at the EAPC 2012 conference.
Impact Paper on reporting the workshop and consensus survey findings submitted to Journal of Pain and Symptom Management, under peer review. Web site for Palliative care Outcome Scale launched 2011 providing open access to the outcome measure and guidance.
Start Year 2012
 
Description Collaboration PRISMA EU project and EAPC Taskforce on outcome measurement 
Organisation European Commission
Department Seventh Framework Programme (FP7)
Country European Union (EU) 
Sector Public 
PI Contribution MORECare, PRISMA and EAPC Taskforce on outcome measurement held a joint international outcomes workshop at the EAPC 2012 conference. The workshop aimed to further the work of the EU PRISMA project on outcome measurement and the EAPC Taskforce by generating recommendations on best research practice in selecting and using outcome measures in EoLC, followed by an on-line consensus survey.
Collaborator Contribution Joint international workshop on outcome measurement in EoLC at the EAPC 2012 conference.
Impact Paper on reporting the workshop and consensus survey findings submitted to Journal of Pain and Symptom Management, under peer review. Web site for Palliative care Outcome Scale launched 2011 providing open access to the outcome measure and guidance.
Start Year 2012
 
Description Collaboration with the European Association for Palliative Care 
Organisation European Association for Palliative Care (EAPC)
Country Italy 
Sector Public 
PI Contribution Jointly organised a workshop on Outcomes measurement to produce better guidance
Collaborator Contribution Joint meeting on outcomes measurement at EAPC conference
Impact Paper is in preparation along with abstract submitted to conference. The results are also being taken forward in our guidance
Start Year 2011
 
Description RCPSC Balfour M. Mount Visiting Professorship in Palliative Medicine 
Organisation Queen's University
Country Canada 
Sector Academic/University 
PI Contribution The Royal College of Physicians and Surgeons of Canada, in collaboration with the Robert Pope Foundation of Nova Scotia, established this professorship in order to bring to the health science faculties in Canada the most distinguished international lecturers in the palliative care community to engage in discussion about, and to lecture on, the physical, psycho-social and spiritual needs of patients requiring palliative care. The professorship is meant to facilitate the work of the multidisciplinary team that contributes to palliative care expertise in the community and university being visited. In 2017, Irene Higginson was accepted as the Visiting Professor within the The Palliative Care Medicine Program (PCMP) in the Faculty of Health Sciences at Queen's University. This is the academic entity at the centre of a regional, inter-professional palliative care network, and was well-placed to maximize the impact of the visit from Professor Higginson. She was invited to participate in formal presentations to faculty, residents and students from the Departments of Medicine, Oncology and Family Medicine (e.g. rounds presentations; team meetings) as well as direct interaction with faculty members and rotating and subspecialty trainees within the Palliative Care Medicine Program. An interactive 'workshop' session focused on one of her specific areas of expertise was arranged with the Ontario Palliative Care Network (OPCN) and representation of individuals from across the province. With Irene Higginson's permission, content from her presentations (including video and audio), was archived and further distributed to regional practitioners, researchers, teachers and administrators through the Queen's Palliative Medicine website.
Collaborator Contribution This proposal was a collaborative effort with strong support locally, regionally, provincially and nationally from individuals who practice within inter-professional teams in academic and community settings, and/or administrative/policy responsibility for palliative/end-of-life care. A variety of venues and formats were used to maximize the opportunities to advance palliative/end-of-life care in Southeastern Ontario, provincially and nationally, and Irene was able to meet with leads in the field in order to knowledge share and develop opportunities for future collaboration.
Impact - Knowledge sharing with Southeastern Ontario Palliative and End-of-Life Network (the Network) and other regional leads in the field - Increasing reach and impact of the Institute's research on a global scale through structured meetings, presentations and events for targeted multi-disciplinary groups and networks - Collaborations and integrated working with research institutions including Ontario Palliative Network, Canadian Partnership Against Cancer and Queen's University
Start Year 2017
 
Description South London Collaboration for Leadership in Applied Health Research and Care (CLAHRC 
Organisation National Institute for Health Research
Department NIHR CLAHRC for South London
Country United Kingdom 
Sector Public 
PI Contribution Leading a theme in the CLAHRC on palliative and end of life care, directly developing methods linked to Guidecare.
Collaborator Contribution Leading theme, local analysis of variations in services and outcomes to improve care
Impact Knowledge exchange, research generation. Disciplines: medicine, nursing, PAM, social sciences, social work, epidemiology, health services research, implementation science.
Start Year 2014
 
Description 23rd Annual Scientific Meeting of Japanese Society for Palliative Medicine (JSPM 2018) Lecture ' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Professor Irene Higginson gave two talks entitled ''Management of Breathlessness in Chronic Respiratory Illnesses' and 'Future-proofing palliative care: evidence of need, trends and challenges in clinical care education and research' at the 3rd Annual Scientific Meeting of Japanese Society for Palliative Medicine (JSPM 2018), Kobe, Japan. 15-16 June 2018. JSPM 2018 is one of the largest palliative care conferences in the world: more than 6000 health care professionals have registered. During the conference doctors, nurses and researchers from Japan and overseas shared expertise and experiences during the plenary sessions, panel discussions and workshops. Medical students, hospice and palliative care volunteers and others interested in this area of work found the conference useful in enhancing their knowledge through scientific updates and discussions.
Year(s) Of Engagement Activity 2018
URL http://jspm2018.umin.jp/english/index.html
 
Description 11th Palliative Care Congress Glasgow: Latest advances in outcome measurement 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 3 day conference in Glasgow
Participated in a Question Time and presented a Latest advances in outcome measurement in palliative care workshop.
Year(s) Of Engagement Activity 2016
URL http://www.pccongress.org.uk/index.php?pageid=1
 
Description 16th World Congress of the European Association for Palliative Care 
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 16th World Congress of the European Association for Palliative Care took place in Berline from 23 to 25 May 2019. The congress attracted a record-breaking number of over 3,000 delegates from a wide range of disciplines including clinicians, caregivers, researchers and educators in palliative care from almost 100 countries. The congress provided participants with the unique opportunity to network and meet with colleagues to exchange knowledge and new information, discuss research results and to hear about innovations in palliative care.
Year(s) Of Engagement Activity 2019
URL https://www.eapc-2019.org/home.html
 
Description Appearance on BBC Breakfast 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Spoke about the importance of palliative care and the Cicely Saunders Institute on BBC Breakfast.
Year(s) Of Engagement Activity 2016
 
Description BBC article and video 
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 Dr Katherine Sleeman (NIHR Clinician Scientist and Honorary Consultant in palliative medicine at the Cicely Saunders Institute) wrote an article for the BBC, drawing on our recent research into future predictions and the global need for palliative care. Two of our international PhD students recorded a vlog about their own experiences of palliative care in Ghana and Malawi, and what they have learnt about palliative care in the UK, which was embedded in the article. So far, it has been read by just under 680,000 people. The majority of the readers (about 420,000) were in the UK, but the remainder included 120,000 in the US, 25,000 in Canada and 15,000 in Australia. The outcome of this is the international reach and dissemination of some of our key studies from 2017, and the communication of our ongoing work with international clinical leads/PhD students.
Year(s) Of Engagement Activity 2018
URL http://www.bbc.co.uk/news/health-43159823
 
Description BMJ Supportive and Palliative Care Editor's blog on MORECare 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Blog by the BMJ editor reporting on the MoreCare workshop on mixed methods. Blog stated that the workshop brought together researchers interested in writing guidelines for effectively designing, analysing and reporting mixed method health service research

Blog discussion and tweets on the MORECare project and development of methods guidance
Year(s) Of Engagement Activity 2011
 
Description CeCo conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact 120 people attended one day conference presentation on the MORECare project

Wider forum discussion on furthering research methods in EoLC.
Year(s) Of Engagement Activity 2010
 
Description Cicely Centenary Celebrations Event Series (CSI100) Campaign June - November 2018 
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 Programme of Events
Last year, to mark the centenary of Cicely's birth and her remarkable contributions to the field of palliative care, we curated a series of events which celebrated her life and showcased the ongoing development of palliative care, both in the UK and internationally. The Cicely Saunders Institute hosted a wide range of lectures, seminars, workshops and other special events, bringing together the research and clinical practice spearheaded by Cicely over the course of her life.

Online Activities
In addition to face-to-face events, we encouraged online engagement throughout the year. The Cicely Saunders Institute Twitter feed used the hashtag #Cicely100 throughout events and activities. We tweeted Cicely's most iconic quotes (#VoiceofCicely), as well as images from the 'Light for Cicely' installation, which was created by artist Caroline McCarthy and features contributions from family, friends and former colleagues (#LightforCicely). Key moments and photographs from Cicely's life were shared by Cicely Saunders International on Twitter (#CicelysLegacy). We explored materials from the archive, including her personal writings, photographs and recordings, on our Instagram account.

Publications
In tribute to her inspiration as the founder of the modern hospice movement, the Cicely Saunders Institute launched a Twitter campaign 100 papers that changed palliative care showcasing our most novel, important or impactful research to date. As we mark the final day of the campaign, we reflect on the landscape of palliative care in the UK, and the challenges we face over the next 100 years.

The Cicely Saunders Institute has identified interventions, such as the Breathlessness Support Service that can improve outcomes for patients who are approaching the end of life, and their carers. Collaboration between academia and policymakers is needed to ensure such evidence-based interventions are incorporated into future healthcare strategies. The Cicely Saunders Institute will continue to produce impactful research and to engage policy makers, building on Cicely's legacy to improve end of life care for all.
Year(s) Of Engagement Activity 2018
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/newsrecords/2018/celebrating-cic...
 
Description Commentary piece on the importance of the roles of research organisations like the NIHR, in funding leading-edge, needs-led research to improve palliative and end of life care across all disease areas. 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Commentary piece by Prof. Higginson for NIHR
Published on 19/02/16
Year(s) Of Engagement Activity 2016
URL http://www.nihr.ac.uk/news/challenges-and-opportunities-in-palliative-and-end-of-life-care-research/...
 
Description Contributed to EAPC Blog reporting on Using the Palliative care Outcome Scale and related Patient Reported Outcome Measures in clinical practice 
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 Liesbeth van Vliet, Research Fellow EURO IMPACT at the Cicely Saunders Institute at King's College London; Dr Richard Harding, Reader in Palliative Care at the Cicely Saunders Institute at King's College London, and Prof Irene Higginson, Director of the Cicely Saunders Institute and Professor of Palliative Care and Policy, King's College London, outline recently published decision support and accompanied guidance on implementing the Palliative care Outcome Scale and related Patient Reported Outcome Measures in clinical care.
Year(s) Of Engagement Activity 2016
URL https://eapcnet.wordpress.com/2016/01/20/using-the-palliative-care-outcome-scale-and-related-patient...
 
Description Contributed to Report of the All Ireland Institute of Hospice and Palliative Care - Global Colloquium on Palliative Care 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Contributed to the Report of the All Ireland Institute of Hospice and Palliative Care - Global Colloquium on Palliative Care
Year(s) Of Engagement Activity 2016
URL http://aiihpc.org/wp-content/uploads/2016/01/AIIHPC-Colloquium-Full-Report.pdf
 
Description Gilead SpR Programme. Haematology Education and Learning SpR, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation given at the Gilead SpR Programme on Palliative Care in relation to Hematology.
Year(s) Of Engagement Activity 2016
 
Description Hospice UK Conference. Plenary Lecture 'What does the future hold for dying people in the UK?' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Professor Higginson gave a Plenary Lecture at the Hospice UK Conference in Liverpool entitled 'What does the future hold for dying people in the UK?'. The Hospice UK conference is the flagship event for the hospice and palliative care community and for those interested in Leading, Learning and Innovating. Speakers were both clinical and non-clinical, from within the NHS and the voluntary sector, from chief executives to trustees, clinical directors to front line nurses and doctors, directors of income generation and communications to heads of business development. Over 800 delegates from hospices, NHS trusts and academia attended.
Year(s) Of Engagement Activity 2017
URL https://www.hospiceuk.org/what-we-offer/courses-conferences-and-learning-events/conferences/hospice-...
 
Description International Palliative Care Consensus Workshop Canada 
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 Talk at the International Palliative Care Consensus Workshop in Ottawa Canada, Aug 2016
Year(s) Of Engagement Activity 2016
 
Description Interview with international philanthropy organisation 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact A group led by Jean Loo (Lien Foundation, Singapore) visited the Institute on 16th May 2017 to learn more about Cicely Saunders International and the work of the Institute. As part of a multi-media project to celebrate the 50th anniversary of the modern hospice movement, they interviewed Irene Higginson and discussed the global need for palliative care and populations. Outcomes of this visit included a filmed interview with Irene about the future ambitions for palliative care (see URL), information about our current research into projections published on the project's webpages and the sharing of:
1) Relevant research reports from the Institute which gave a sense of the challenges and future of palliative care in the UK
2) Innovative projects or groups from the Institute that demonstrate a strong forward-looking spirit of the direction of palliative care
Year(s) Of Engagement Activity 2017
URL http://aftercicely50.com/#section4
 
Description Involvement in pre-conference workshop at JCECC Conference - Hong Kong 
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 Professor Higginson led a workshop entitled 'Improving research in end of life and palliative care: an interactive workshop using findings from the MORECare Statement & study' . The workshop enabled attendees to consider the main challenges in research in palliative and end of life care; to understand the MORECare statement, its content and how it can be used in detail; to understand the meanings of complex interventions and complex situations and how these are relevant to palliative and end of life care research; to understand the Medical Research Council (MRC) guidance for the development and evaluation of complex interventions; to consider specific aspects of the MORECare statement, including outcome measurement, ethical aspects, and attrition from studies; to consider the way that the MORECare statement has been applied in research practice and to identify additional resources for further training and key references
Year(s) Of Engagement Activity 2018
 
Description Involvement in pre-conference workshop at Taiwan Academy of Hospice Palliative Medicine 
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 Professor Higginson led a workshop entitled 'Development and education of professionals in palliative care'. The workshop discussed ideas for responding to the need for sufficient capacity of professionals in palliative care, and highlighted what is currently being done in the UK, and what needs to be done in the future to ensure the growing need is met.
Year(s) Of Engagement Activity 2018
 
Description Lecture on New models and transformative research for the new era of 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 Gave lecture on New models and transformative research for the new era of palliative care in Reggio Emilia
Year(s) Of Engagement Activity 2016
URL http://www.asmn.re.it/allegati/SeminariRicerca_18042016.pdf
 
Description MORECare featuring in Cicely Saunders Institute Triennial report 
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 increased traffic on website, increased email queries

talk, email exchanges
Year(s) Of Engagement Activity 2014
 
Description MORECare poster presentation EAPC Conference 2015 Denmark 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 10 minute presentations then Q&A. 10 people left me their email in order to be updated on new developments.
Year(s) Of Engagement Activity 2015
 
Description MORECare stakeholder policy workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact MORECare stakeholder consultation with policy makers to review how to present results and what research methods are useful for them

Policy makers asked to make recommendations and form a consensus on best practice to present methods guidance
Year(s) Of Engagement Activity 2011
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Guy Ludbrook (Professor of Anaesthesia at the Royal Adelaide Hospital and University of South Australia) met with Irene Higginson on 20th February 2017. Guy runs a translational research programme and works as a key advisor to the Australian Chief Medical Officer on drugs and devices (chairing that committee) - he was particularly interested in transforming healthcare service delivery through digital processes and discussed this with Irene.
Year(s) Of Engagement Activity 2017
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Valerie Rowe (Palliative Care Consultant, UK) and Mfanelo Sobekwa (Palliative Care Consultant, Johannesburg University, South Africa) visited the Institute on 28th March 2017 to meet with Sian Best and other members of staff. Outcomes included the sharing of key reports and resources, and discussing future opportunities for strategic collabotation.

Dr Valerie Rowe stated the following about the visit:

'Thank you so much for carving out a couple of hours on Tuesday afternoon to spend time with Mfanelo and myself. He really appreciated visiting the CSI and learning more about the way it is such a hub for promoting palliative care research and clinical care, and seeing how those linked with the Institute are pioneering holistic care worldwide. I also found it amazing to see how the work of CSI is expanding. Who knows how these links may develop but I do sense that he may be playing a strategic role in the continuing development of palliative care in South Africa in the future.'
Year(s) Of Engagement Activity 2017
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact A group from the Taipei City Hospital in Tawain, led by Deputy Superintendent Li-Lin Kuo, accompanied by representatives from the Science and Technology Division of the Taipei Representative Office in the United Kingdom (an institution which aims to promote bilateral trade, investment and technology cooperation between Taiwan and the UK) attended the POS workshops in February 2017 and also met with key members of the department. One of the outcomes of this visit, as well as increased opportunities for international collaboration, was the global implementation of leadership training, based on our Institute's models, and outcome measures, as stated by Deputy Superintendent Li-Lin Kuo:

"We all agreed that leadership training is the key to the future and the world. The POS outcome measure is the most practical tool to evaluate the performance of our work in palliative care. All the staff here are so passionate and willing to help and share. Many thanks to Professor Higginson and Dr Harding, for sharing their experience and wisdom, and to Dr Guo who came to Taipei and introduced POS to us in November 2015." (Deputy Superintendent Li-Lin Kuo, Taipei City Hospital).
Year(s) Of Engagement Activity 2017
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/newsrecords/2017/Cicely-Saunders...
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A group of researchers from Kyushu International College of Nursing, led by Mitsue Nakamura, visited the Institute on 22nd March 2017 to meet with staff about Advance Care Planning for patients of non-cancer life threatening diseases, such as heart disease, respiratory failure, and renal failure. The outcome of this meeting was a comprehensive response to the interview questions about the practical application of advance care planning for patients with chronic illness, allowing the group to structure and recommend a new care model for ACP in Japan based on this consultation.
Year(s) Of Engagement Activity 2017
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Lynna Chandra (founder of the first pediatric palliative care service in Indonesia) met with Gao Wei, Ping Guo, Jonathan Koffman, Richard Harding, Mendy Dzingina and Irene Higginson on 10th January 2017 to discuss their work on outcome measures, particularly paediatric outcome measures, and work on health economics. Outcomes of this visit included:

- Lynna suggested linking up with "Health Equity Initiative" as those fellows would benefit from attending Cicely Saunders Institute modules.
- Use of children's POS in Indonesia: Julia Downing and Richard Harding could visit Jakarta after attending conference in Singapore.
- Lynna sent papers that demonstrated reduced admissions, length of stay and increased home death following introduction of a hospital palliative care service in South Africa.
- The potential for funding MSc scholarships- Richard gave Lynna a summary document of successes from overseas students, a rough costing for a full scholarship and examples of the effect of our multidisciplinary course on career trajectories for overseas students.
- Lynna wanted to link Richard up with "Health Equity Initiatives"- she is a Board Member and is interested in fellows attending some of our modules
- Lynna interested in following up on children's POS with a visit after the Singapore meeting; she is working with Julia Downing on this.
- Lynna wants to link Institite to "Behavioural Insights" in terms of change management (linked to POS implementation). This is an NGO that came out of 10 Downing Street.
- Lynna later met Sir Malcolm Grant in Vienna at the Philanthropreneurship Forum and had the opportunity to highlight work that is being done at CSI. The CSI will be connecting with the Behavioural Insights Team (see URL) to figure out how research can be linked to government policies and ultimately implementation.
Year(s) Of Engagement Activity 2017
URL http://www.behaviouralinsights.co.uk/
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Prof Mitsunori Miyashita (Professor in the Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine) has been participating in a long-term placement at the Cicely Saunders Institute where he has worked with key staff to undertake secondary analysis of the Institute's qualitative datasets. He has been collaborating with senior staff (Catherine Evans and Gao Wei) to produce publications relating to the IARE I and QUALYCARE projects, particularly in regards to bereaved carer survey data. The outcomes of this will be co-authorship of papers across two international centres of research, knowledge sharing and increased collaboration in work on both national and international datasets.
Year(s) Of Engagement Activity 2017,2018
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Hanne Besss Boelsbjerg (Lecturer at the Department of Sociology, University of Copenhagen) visited the department on 30th August 2017 to share the findings from her PhD research which sought to provide an understanding of the ways cancer patients, who self-identify as Christian or Muslim believers, reflect on and live their faith in the context of the late stages of their illness. Some of these findings resulted from a previous research placement that Hanne held at the Institute.
Year(s) Of Engagement Activity 2017
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Greger Fransson (lead of the Swedish National Register for Palliative Care) attended the POS workshops in February 2017 and later met with members of the Institute's POS team to discuss implementing the Swedish translation of the POS/IPOS outcome measure more widely. Greger consulted with staff at the Institute about how to manage patient self-reported data, how to use electronic platforms for data collection and access, and other issues relating to the implementation of POS in order to streamline the use of POS/IPOS in Sweden.
Year(s) Of Engagement Activity 2017
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/newsrecords/2017/Cicely-Saunders...
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nadine Marshall (Education Program Manager at the Centre to Advance Palliative Care, New York) visited the Institute to learn more about Palliative Care in the UK and our work at Cicely Saunders Institute.
Year(s) Of Engagement Activity 2017
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Emmanuel Exitu, a documentary maker from Italy, visited the Cicely Saunders Institute on 2nd March 2017 to visit the Cicely Saunders archive and record an interview with Irene Higginson about Cicely's legacy and the research undertaken at the Institute. As well as the documentary, a meeting with Dr Rita Borgo (Senior Lecturer in the Department of Informatics, King's College London) and Dr Erika Pace (cardiologist, The Royal Marsden Hospital) to discuss a potential application for King's Together seed-funding scheme was proposed.
Year(s) Of Engagement Activity 2017
URL https://www.ilfoglio.it/cultura/2016/10/07/news/la-morte-e-dolce-105058/
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact A contingent from Beijing Cancer Hospital, led by Professor Wei Liu Head of Palliative Care Centre and Day Care Centre, attended the POS workshops in February 2017 and spent a week meeting with key members of the department and visiting some of the sites that we collaborate with, including St Christopher's Hospice. One of the outcomes of this visited was the international adaptation of our outcome measures and subsequent influence on palliative care in China, as stated by Professor Wei Liu:

"The Cicely Saunders Institute has an excellent reputation for palliative care and is very well-known in mainland China. The POS workshop was very well designed and thought-provoking. Outcome measurement is not only a requirement of evidence-based medicine, but also an objective indicator to evaluate patients' benefits from palliative care. However, there is no standardized palliative outcome measure in China. We hope to introduce POS family to China and spread the idea of palliative care outcome measures. In addition, we are also looking forward to further collaboration with the Cicely Saunders Institute in the field of clinical medicine, teaching and scientific research," (Professor Wei Liu, Beijing Cancer Hospital).
Year(s) Of Engagement Activity 2017
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/newsrecords/2017/Cicely-Saunders...
 
Description Meeting with international visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Helen Chan (Associate Professor at The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong) completed a placement at the Institute during which she met with staff working on research on palliative care for older people (Catherine Evans, Matt Maddocks, Katherine Sleeman, and PhD fellows Anna Bone, Simon Etkind and Clare Ellis-Smith), completed relevant MSc modules and consulted with staff about advance care planning and end of life care for the frail elderly/people of dementia. The outcomes of this visit included Helen completing data analysis that contributed towards a publication for the OPTCare Elderly study and the submission of an application to the Public Policy Research Fund in Singapore, with Cicely Saunders Institute as a co-applicant, to fund data collection for the Institute's IARE study II in Hong Kong. Helen provided the following statement about this visit:

"It is my privilege to have the opportunity to visit CSI. This is an eye opening visit as I could meet with a multidisciplinary group of internationally renowned experts in palliative care. Gaining recognition and support for research related to palliative care is challenging given that it is not a prioritized area in my research community though the societal need is universal. Their sharing gave me strength to move on and also insights for building a robust research for enhancing palliative care in Hong Kong."
Year(s) Of Engagement Activity 2017
URL http://www.jneuropsychiatry.org/peer-review/psychometric-properties-of-the-caregiver-inventory-for-m...
 
Description Meeting with national visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Ian Smith, the interim Chairman of King's College London, visited the Institute and met with Irene Higginson on 11th January 2018. Ian was introduced to specific work on population ageing and need for care homes, emergency department attendance at the end of life and evidence response to NHS crisis. The outcome of this visit is that links were established between the work being undertaken at the Institute and the issues currently affecting King's College Hospital, and opportunities for future collaboration were discussed.
Year(s) Of Engagement Activity 2017
 
Description Meeting with national visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Tracey Bleakley (CEO of Hospice UK) visited the Institute on 19th April 2017 and met with Katherine Sleeman, Catherine Evans and Anna Bone to discuss our work with older people, Emeka Chukwusa to discuss our current work with Hospice UK, CSI Patient and Public Involvement Strategy Group members about how PPI influences our research and Irene Higginson about the general work of the Institute and future opportunities for collaboration. One of the outcomes of this visit was the potential of a MOU to help facilitate much closer partnership working between HUK and CSI, which would be drawn up by the Chief Clinical Officer of HUK.
Year(s) Of Engagement Activity 2017
 
Description Meeting with national visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Dr Madina Kara (NIHR programme manager responsible for CLAHRCs) visited the Institute 24th January 2017 to meet with Irene and other key members of the team about the CLAHRC- related work taking place within the Institute. The outcomes of this visit were a chance to share our focus on social care and public health, which may inform future reports and research themes. Feedback about the visit was as follows:

'Thank you very much for meeting with Madina today. She really enjoyed her visit and was extremely enthusiastic about the work that you all shared. She said that it was really helpful to meet with members of our CLAHRC and was really interested in your work. I think that the meeting was really timely, as it has raised the profile of our CLAHRC in a really positive way.'
Year(s) Of Engagement Activity 2018
 
Description Meeting with national visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Gabby Farrar (fifth year medical student at Leeds University) undertook a placement within the clinical team at the Institute. The outcome of this was a change in Gabby's perspective of effective palliative care teaching practice, specifically in terms of spiritual support, which she documented in a blog post about her visit (see URL).
Year(s) Of Engagement Activity 2017
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/newsrecords/2017/Learning-from-t...
 
Description Meeting with national visitor/stakeholder 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Prof Chris Whitty (Chief Scientific Adviser, Department of Health) visited the Institute on 10th February 2017 and met with Irene Higgindon to learn more about palliative care, and our contribution to care in cases of multimorbidity. Prof Whitty also met NIHR fellows and specific project teams (Optcare Neuro and Guice_Care services). Outcomes of this visit included:

- Introduced Prof Whitty to work of the Institute that may be relevant to NHS, particularly multimorbidity.
- Opportunity for further discussion about whether palliative care could become a speciality within the CRN.

After the visit a document was developed by CSI team with six incremental changes that would make a difference to palliative care provision and this was sent to Prof Whitty.
Year(s) Of Engagement Activity 2017
URL https://publications.parliament.uk/pa/ld201617/ldselect/ldnhssus/151/151.pdf
 
Description Meeting with policymaker 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact Cllr Izzi Seccombe OBE (Chair of the Local Government Association's Community Wellbeing Board and Leader of Warwickshire County Council) met with Irene Higginson, Katherine Sleeman, Anna Bone and Clare Ellis-Smith on 8th February 2018 to discuss projections and routine data work, and outcomes work. Cllr Seccombe was very understanding of the need to improve end of life care, and has ensured this is a priority for the Health and Wellbeing Board she chairs.

A useful engagement opportunity identified from this visit was to submit evidence to the inquiry into adult social care funding. Anna Bone will collate evidence to submit to the inquiry on long-term adults social care funding (see URL).
Year(s) Of Engagement Activity 2018
URL http://www.parliament.uk/business/committees/committees-a-z/commons-select/communities-and-local-gov...
 
Description NHS Southwark Clinical Commissioning Group Breathlessness Event 
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 Dr Matt Maddocks and Dr Natasha Lovell were invited to attend a breathlessness event organised by NHS Southwark Clinical Commissioning Group on 18th October as academic colleagues interested in breathlessness. It was an opportunity to network and discuss their research with the institute as well as potential collaborations with other researchers.
Year(s) Of Engagement Activity 2018
URL https://www.eventbrite.co.uk/o/nhs-southwark-clinical-commissioning-group-2917860039
 
Description National End of Life Care programme news letter 31/03/11 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
Results and Impact National end of life care programme news letter 31/03/11. Project highlighted and discussed

Continued involvement of the National EOLC Programme with the project and planned dissemination to EoLC facilitators trhrough the programme
Year(s) Of Engagement Activity 2011
 
Description Open House at the Cicely Saunders Institute, September 2017 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The Cicely Saunders Institute (CSI), King's College London, opened its doors to the general public as part of the London Open House weekend. Over 60 members of the public attended this event. They were able to explore the CSI building in a guided tour, take part in games and quizzes, meet CSI researchers and the artists who contributed to the building, and also pay a visit to the Macmillan information centre.
Our research specifically:

- Emel Yorganci and Cheng-Pei Lin, Evaluating and Improving Care: C-CHANGE complexity poster, AMBER project
- Doekhee Yi and Rebecca Wilson, Symptom-led Research,
- Cathryn Pinto, Living and Dying in Society, lay summaries of Optcare Elderly and IARE.
- Jo Teixeira and Alice Firth, Person Centered Outcomes and Assessment Measures, OACC and C-CHANGE
- Ping Guo and Catherine Evans, Global, Global Index on Palliative Care, WHO Rehab centre, Global booklet, PhD and post-doc work
Year(s) Of Engagement Activity 2017
URL https://www.kcl.ac.uk/nursing/departments/cicelysaunders/newsevents/eventrecords/2017/Sept/OpenHouse...
 
Description POS Workshops 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Day one is designed to enable outcome measurement in clinical scenarios. An opportunity to:
To be introduced to Outcome measures and the POS family of measures
Explore different ways of using the POS family of measures, understanding the role that they can play in improving the quality, efficiency and availability of palliative care
Hear experiences of using outcome measurement in clinical practice from an international perspective
Be trained in using the various POS family of measures and examine how the use of these outcome measures can demonstrate the effects on your service and reporting of data
Hear about the latest IT developments and showcase of integrated data reporting on clinical systems

Day Two is focussed on the use of POS in research. An opportunity to:
Review the latest POS family scientific developments including their validity and reliability
Discuss and review the latest findings generated from research involving the POS family of measures including work developing tools for dementia patients, as well as Renal and Neurological conditions, and Heart Failure patients
Discuss and shape future scientific development of the POS family of measures analysing data; to be used in research and translation and cultural adaptations in Africa
Year(s) Of Engagement Activity 2017
URL http://pos-pal.org/maix/courses-and-workshops.php
 
Description POS Workshops February 2018 
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 These highly interactive workshops are aimed at all professionals in palliative and end-of-life care such as clinicians (nurse, physiotherapists, psychologists, allied health professionals, oncologists, GP, physicians), social workers, researchers, managers, commissioners and educators. The workshops are highly relevant for professionals working in a wide range of settings (hospice, primary and secondary care, care homes, community care, specialist palliative care, social care). If you are already using or planning to use or implement POS or similar outcome measures these workshops will equip you with the necessary knowledge and skills. The programme also included Oral and Poster presentations for invited POS users to share their experiences with all attendees across the two days.
Year(s) Of Engagement Activity 2018
URL https://pos-pal.org/maix/courses-and-workshops.php
 
Description PPI Online Forum 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The team behind the Cicely Saunders Institute online forum for PPI were winners of the 'Innovation Award', acknowledging the development of this online platform for PPI and its impact on improved research delivery. The forum now has around 90 members, including researchers, patients, carers, and members of the public, and dialogue within this online forum have led to improved research proposals, materials, and involvement of PPI members in research at the Institute.
Year(s) Of Engagement Activity 2016,2017,2018
 
Description Palliative Care Outcome Scale Workshop - Research Day 
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 On February 14th 2020, the Cicely Saunders Institute hosted the Palliative Outcome Scale Workshop Research Day including talks on 'Advancing the use of the POS family of measures across different resarch designs including trials', 'POS as a preference-based measure', 'POS family of measures in real life settings', 'POS as a primary outcome in a mixed methods feasibility cluster RCT of the AMBER care bundle', 'How to analyse POS and calculate sample size'
Year(s) Of Engagement Activity 2020
 
Description Palliative Care Quality Indicators and Outcomes Symposium, Skype conference from London to New Zealand 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gave a talk at the Palliative Care Quality Indicators and Outcomes Symposium
Year(s) Of Engagement Activity 2016
 
Description Project Advisory Group involvement policy makers 
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 Project Advisory Group membership included active invlovement by policy makers, researchers and clinicians

Individuals actively reviewed and commented on the project's progress and notably the development and dissemination of the MORECare statement.
Year(s) Of Engagement Activity 2010,2011
 
Description Project Advisory Group meetings, workshops and masterclass with lay user participation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact Two lay members actively participated in the MORECare Project Advisory Group contributing throughout the project and on the main output, the MORECare statement. Lay service users were actively involved in the five MORECare expert workshops on ethics, outcome measurement, mixed methods, statistical data analysis, and health economic evaluation. 15 lay members attended and participated in the MORECare Masterclass on research methods in palliative and EoLC held at the NCRI 2012 conference.

More than expected lay service user interest and involvement in the research project, particularly the expert workshops and masterclass.
Year(s) Of Engagement Activity 2010,2011,2012
 
Description Royal College of Physicians' Quincentennial Society meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Quincentennial Society meeting, entitled 'Heroes - people who changed the world'

A variety of speakers will give talks on influential people, including:

Julius Caesar
Sir Ernest Shackleton
Sir Winston Churchill
Dame Cicely Saunders

Professor Higginson gave a 20 minute presentation on Dame Cicely Saunders
Year(s) Of Engagement Activity 2016
URL https://www.rcplondon.ac.uk/events/quincentennial-society-meeting-3-october-2016
 
Description Salzburg Global Seminar Session on End of Life Care 
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 The session was highly participatory, with a strong focus on building new insights and aggregating perspectives and experiences from different sectors, areas of expertise and regions. Working groups, each with a thematic and/or country focus, prepared recommendations.
Year(s) Of Engagement Activity 2016
URL http://www.salzburgglobal.org/calendar/2010-2019/2016/session-562.html
 
Description Salzburg Series 
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 A global conversation, including monthly Twitter 'launches' to coincide with international awareness days, corresponding blog posts, podcasts, videos and reports, over 12 months with academic and clinical leads spearheading the campaign from around the world. Since its conception, there has been an average of nearly 500 views for each blog post, the #allmylifeQs hashtag has received more than 10.4 million impressions on Twitter and been used in more than 3,500 tweets, and the online reach has extended to 182 countries. Monthly topics have included the inequality of palliative care provision in low- and middle-income countries, the emotional and financial impact of caring for a loved one at the end of life and the future research needed to improve care for vulnerable groups such as refugees, people with complex physical symptoms, and those living in poverty. The series has given project teams and researchers from world-leading institutions the opportunity to showcase their most recent research into global healthcare trends, place of death, how to support an ageing population and treatment for non-cancer conditions. These issues affect millions of people worldwide, and the application of this work into actual clinical practice has the potential to markedly improve the quality of life for patients and families approaching the end of life.
Our research specifically:
Jonathan Koffman, centrality and interpretations of happiness across two cultural groups
Richard Harding, growing use of outcome measurement globally and importance of using measures to build evidence base for the effectiveness and cost-effectiveness of palliative care
Irene Higginson, need for future research into symptom control (breathlessness, fatigue, frailty, pain and nausea), groups who currently miss out on palliative care, cost-effective health and social care
Year(s) Of Engagement Activity 2017
URL http://www.salzburgglobal.org/topics/salzburg-updates/article/salzburg-questions-twitter-series-on-h...
 
Description Service user / consumer workshops 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact MORECare stakeholder consultation workshops (n=2) with lay service users of end of life and palliative care - on the potential research activity

Valuable information on how to disseminate findings, more than expected interest on research methods.
Year(s) Of Engagement Activity 2011
 
Description Steve Dewar Associates tweets on MORECare workshops 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Steve Dewar tweeted on the MORECare expert workshops on mixed methods and health economics following his invited attendance at these events.

General public/academics following tweets on the MORECare project
Year(s) Of Engagement Activity 2011
 
Description Talk at Danish Association for Palliative Medicine Conference (Denmark) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 45 minute talk titled: 'What are the most important questions for palliative care research from the health services perspective?', followed by Poster Discussion (5 posters)
Year(s) Of Engagement Activity 2017
 
Description Talk at Highgate Literary & Scientific Institution 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk at Highgate Literary & Scientific Institution on Challenges for the future in Palliative Care
Year(s) Of Engagement Activity 2017
URL http://www.hlsi.net/
 
Description The 9th World Research Congress of EAPC 2016. Knowledge transfer: What works and what doesn't work? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presented a talk: 'Knowledge transfer: What works and what doesn't work?' at the EAPC 2016 Congress in Dublin
Year(s) Of Engagement Activity 2016
URL http://www.eapcnet.eu/research2016/
 
Description The Marie Curie Design to Care Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk titled Designing a toolkit to enable the design of palliative care services at the Marie Curie Design to Care conference. Held in Cambridge
Year(s) Of Engagement Activity 2016
 
Description The Telegraph cite Prof. Higginson in article titled: 'Unacceptable failures' in end-of-life care at nights and weekends, report finds 
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 Article published by The Telegraph on 07/05/17 cited Prof. Higginson. This was a quote taken from the Cicely Saunders International Annual Lecture.
Year(s) Of Engagement Activity 2016
URL http://www.telegraph.co.uk/news/2016/05/07/unacceptable-failures-in-end-of-life-care-at-nights-and-w...
 
Description Tweets on MORECare findings 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact OUR tweets on MORECare have been retweeted by journals, organisations and health professionals. People have also tweeted about our different papers

General public/academics following tweets on the MORECare project
Year(s) Of Engagement Activity 2013
 
Description Union for International Cancer Control Consensus meeting via teleconference 
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 International consensus meeting via teleconference (Paris). Ran from 31 Oct to 3 Nov.
Year(s) Of Engagement Activity 2016
 
Description Wrote an evidence piece titled: An evidence-based plan for palliative care can ease the NHS crisis 
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 Prof Irene Higginson, Dr Matthew Maddocks, Dr Catherine Evans & Dr Wei Gao published an evidence piece in response to the NHS crisis.
Published 08/03/17
Year(s) Of Engagement Activity 2017
URL https://www.hsj.co.uk/topics/efficiency/an-evidence-based-response-to-the-current-nhs-crisis/7016248...