Annual Report EAPC

EUROPEAN ASSOCIATION FOR PALLIATIVE CARE
One Voice, One Vision in Palliative Care
ANNUAL REPORT
2019/2020


Content
Table Of Contents
Message From President.................................................................. 02
About Us............................................................................................. 03
Our Members..................................................................................... 04
Palliative Care Advocacy................................................................... 05
Our Work (EAPC GROUPS & PUBLICATIONS)................................. 06
Events and Meetings......................................................................... 07
EAPC Research................................................................................... 08
EAPC on Social Media........................................................................ 10
Our Thanks......................................................................................... 11


A Message From...
OUR PRESIDENT
Welcome to our annual report for 2019 and 2020. Please take the time to read this report that reflects on two very different years in the history of the European Association for Palliative Care (EAPC). Just as for the rest of the world, for the EAPC the last two years have been a complete contrast. In 2019, in Berlin the EAPC hosted its largest and most successful World Congress ever with over 3000 delegates attending in-person. In 2020, a global pandemic swept across the world changing many of our lives beyond recognition.
A cancelled 2020 EAPC World Research Congress scheduled to take place in beautiful Palermo threatened the very existence of the EAPC. A quick change of plan and the support of our members and supporters led to our first ever World Research Congress online. We are grateful to all of our contributors, sponsors and the over 1000 delegates who registered, attended and made such a success of this event.
It is important to remember that we are a membership organisation, and the role of the Board is to serve the best interest of our members. We always welcome your feedback, ideas, critique and contact so that we make sure that the EAPC is responsive in its support of palliative care at both local and national level. At our World congress in Berlin in 2019, we hosted a meeting of the chairs and presidents of our national associations and now intend making this a regular feature of our World Congresses. In 2019/2020 we represented 60 national associations from 33 countries and also had individual members from 52 countries globally. Through our members and our activities, the EAPC aims to make sure that we advocate for and support the development of palliative care to improve the experience of patients and families.
As President, I would like to offer my thanks to the many people who contribute to the success of the EAPC, our members and supporters, our task forces and reference groups, the Research Network, our social media team, my fellow board members and to the team in head office. I hope you enjoy this Annual Report which gives details of our activities over the last two years. It gives a flavour of all we are doing and maybe ideas of what we can do. What we can achieve together as a community of people who believe in the value of palliative care.
My very best wishes,
PROFESSOR CHRISTOPH OSTGATHE
EAPC President 2019-2023


About Us
The EAPC is a forum for those working, or with an interest in palliative care throughout Europe and beyond. Our members are engaged in palliative care across the lifespan from a range of perspectives: specialist and generalist clinical practice, education, professional groups, policy and research.
The EAPC lobbies and advocates for the development of palliative care through its activities and through its work in developing the practice of palliative care and is recognised by the Council of Europe.
MISSION STATEMENT
The European Association for Palliative Care is a membership organisation dedicated to lobbying and advocating for the promotion and development of palliative care throughout Europe.
MISSION:
To influence, promote and advocate for the delivery of high quality palliative care across the life span by fostering and sharing palliative care education, research, policy and evidence-based practice.
VISION:
One voice, one vision. To lobby and advocate for a world without preventable suffering where those with life-threatening illnesses and their families have timely access to high-quality palliative care as an integral part of the healthcare system.
CORE VALUES:
• Strive for excellence in palliative care • Value interdisciplinary working and
representation
• Respect diversity
• Work collaboratively


Our Team
The EAPC board 2015 - 2019
Pictured left to right (front row): Paul Vanden Berghe, Danila Valenti, Catherine Walshe, Anne de La Tour Irene Murphy, Phil Larkin
Second row: Christoph Ostgathe, Josep Porta Sales, David Oliver, Carlo Leget Unavailable for the photo: Tiina Saarto, Mai-Britt Guldin, Daniela Mosoiu
President:
Phil Larkin
Vice-Presidents:
Carlo Leget Christoph Ostgathe
Treasurer:
Paul Vanden Berghe
Secretary:
Catherine Walshe
Board Members:
Anne de la Tour (To Mar 2018) Mai-Britt Guldin
Sébastien Moine (From Mar 2018) Daniela Mosoiu
Irene Murphy David Oliver Josep Porta Sales Tiina Saarto Danila Valenti
EAPC RESEARCH NETWORK CHAIR:
Augusto Caraceni (from Oct 2018)
(Ireland)
(Netherlands) (Germany)
(Belgium)
(United Kingdom)
(France) (Denmark) (France) (Romania) (Ireland)
(United Kingdom) (Spain)
(Finland) Italy)
(Italy)


Our Team
EAPC board from 24 May 2019 to May 2023 Elected at the General Assembly,
Berlin, Germany
Pictured left to right: Natasha Pedersen, Gert Huysmans,
Josep Porta sales, Danila Valenti, Daniela Mosoiu, Catherine Walshe,
Christoph Ostgathe, Sébastien Moine, Sandra Martins Pereira, Sonja McIlfatrick Karl Bitschnau, Jeroen Hasselaar, Martin Loučka
President:
Christoph Ostgathe
Vice-Presidents:
Sébastien Moine Sandra Martins Pereira Jeroen Hasselaar
Treasurer:
Catherine Walshe
Secretary:
Gert Huysmans
Board Members:
Daniela Mosoiu Josep Porta Sales Danila Valenti Sonja McIlfatrick Natasha Pedersen Martin Loučka Karl Bitschnau
EAPC RESEARCH NETWORK CHAIR:
Augusto Caraceni
(Germany)
(France) (Portugal) (Netherlands)
(United Kingdom) (Belgium)
(Romania)
(Spain)
(Italy)
(Northern Ireland) (Norway)
(Czech Republic) (Austria)
(Italy)


Board Meetings:
The EAPC board of directors aims to meet twice a year in person and also meets in between by video conferencing.
2019
During 2019 the board met in person on three occasions:
Date:
26–28 March 2019 24 May 2019
22–24 October 2019
Location:
Dublin, Ireland Berlin, Germany Dublin, Ireland
2020
During 2020, due to the global COVID-19 pandemic, the board members were unable to meet in person.
The whole board met on Zoom on five occasions.
Date:
25 March 2020 2 June 2020
29 June 2020
21 October 2020 30 November
Location:
Online Online Online Online Online


Our Members:
60
Member associations from 33 countries
320
Individual Members (+17% since 2018) individual members from 52 countries globally
Europe n=57
non-European
(n=3; Australia & New Zealand)
412
National Association Board Members


Palliative
care advocacy:
The EAPC continues to advocate for the development of palliative care throughout Europe and beyond. Examples of this include our work with:
CIVIL SOCIETY FORUM ON DRUGS:
The European Union Civil Society Forum on Drugs (CSFD) includes organisations from across Europe which are working at the national, regional and international level on issues related to drug use, drug treatment, harm reduction and drug policies. The EAPC has been involved in raising awareness of the problems of accessibility and availability of opioid medication for medical use, including pain management, across Europe and worldwide. Documents from the CSFD have included statements on accessibility and the need to maintain the availability of opioids for medical use in pain and other symptoms and the avoidance of over restrictive drug control measures.
WORLD HEALTH ORGANIZATION (WHO):
The EAPC has been represented at the WHO European Meeting by EAPC CEO, Julie Ling. Attending these meetings aims to ensure that palliative care is on the agenda at the WHO.


Our work:
EAPC TASK FORCES AND REFERENCE GROUPS:
The EAPC has a number of focused working groups called Task Forces and Reference Groups; we are indebted to the energy, effort and enthusiasm that are shown by the many people engaged in the work of these groups. We are mindful that they donate their time and expertise on a voluntary basis. There are currently eight active Reference Groups and 19 active Task Forces.
Task Forces 2019 (n=19)
LGBT+
Medical Education Occupational Therapy Palliative Sedation
Prisoners
Refugees & Migrants
Social Work
Volunteering
Wish to Hasten Death
ACP in Dementia
Bereavement
Children and young People Cost of Family Caregiving Development of PC in Europe Big Data in End-of-life Research Healthcare Guidelines
Heart Disease
Last Aid
Leadership
Reference Groups 2019 (n=8)
Aging and Palliative Care
Education and Training in Palliative Care Family Carers
Intellectual Disability
Neurology
Primary Care
Public Health
Spiritual Care
New groups in 2020
Task Forces
Palliative wound care


Publications arising from EAPC Task Forces & Reference Groups 2019-2020:
2019
Paal P, Brandstötter C, Lorenzl S, Larkin P, Elsner F. Postgraduate palliative care education for all healthcare providers in Europe: results from an EAPC survey. Palliative & Supportive Care. 2019 Oct;17(5):495-506. Postgraduate palliative care education for all healthcare providers in Europe: Results from an EAPC survey.
EAPC ATLAS of Palliative Care in EUROPE (3rd edition). Arias, N. (Natalia); Garralda, E. (Eduardo); Rhee, J.Y. (John Y.); et al. https://hdl.handle.net/10171/56787
2020
Martins Pereira S, Hernández-Marrero P, Pasman HR, Capelas ML, Larkin P, Francke AL. Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports. Palliative Medicine.
2020 Sep https://doi.org/10.1177/0269216320956817
Solari A, Giordano A, Sastre-Garriga J, Köpke S, Rahn AC, Kleiter I, Aleksovska K, Battaglia MA, Bay J, Copetti M, Drulovic J. EAN guideline on
palliative care of people with severe, progressive multip Journal of Palliative Medicine. 2020 May 29. https://www.liebertpub.com/doi/10.1089/jpm.2020.0220
le sclerosis.
Bitschnau KW, Firth P, Wasner M. Social work in hospice and palliative care in Europe: Findings from an EAPC survey. Palliative & Supportive Care.:1-8. https://www.cambridge.org/core/journals/palliative-and-supportive-care/ article/social-work-in-hospice-and-palliative-care-in-europe-findings-from -an-eapc-survey/49A5EF125BB19B02C352445347F120BA/share/355b762 9dc239e8ba5257adcb52dfd8fd4ae90a1
Froggatt KA, Collingridge Moore DC, Van den Block L, Ling J, Payne SA, Arrue B, Baranska I, Deliens L, Engels Y, Finne-Soveri H, Froggatt K. Palliative care implementation in long-term care facilities: European Association for Palliative Care White Paper. Journal of the American Medical Directors Association. 2020 Feb 27. https://www.jamda.com/article/S1525-8610(20)30034-7/fulltext
Best M, Leget C, Goodhead A, Paal P. An EAPC white paper on multi-disciplinary education for spiritual care in palliative care. BMC Palliative Care. 2020 Dec 1;19(1):9. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-019-0 508-4
We are pleased to report that several key EAPC documents have been translated into a range of languages and are available on the EAPC website.
EAPC members can access all of these papers by logging into our Members only area on the EAPC website.


Collaborative activities:
The EAPC welcomes the opportunity to work jointly with many other leading international organisations to foster new initiatives, promote conferences and seminars, to exchange information and competencies, and contribute to advocacy. These include:
Highlights from the last two years
• Publication of the EAPC Atlas of Palliative Care in Europe
• Our best attended congress ever
• Joined the European Cancer Organisation (ECCO)
• Working closely with our global partners. Our CEO, Julie Ling is Chairperson of the WHPCA
• With a Memorandum of Understanding in place, the EAPC continues to work collaboratively with the European Association of Neurology (EAN)
• The European Palliative Care Academy, which is supported by the Robert Bosch Foundation, works in collaboration with the EAPC, as a task force, to develop leadership in palliative care.
• The International Palliative Care Family Research Collaboration (IPCFRC) functions under the auspices of the EAPC and meetings of the group are regularly held at the EAPC World Congresses
• The EAPC continues to collaborate with the WHO in the context of contributing to the implementation of the WHO Executive Committee resolution on the integration of palliative care in healthcare systems at the World Health Assembly in May 2014.
• Partnering with Learning Technology Services to deliver our first ever fully online EAPC World research congress.


EAPC Events and Meetings:


Who attended? EAPC World Congress 2019 NUMBER OF DELEGATES 3034 – OUR BIGGEST CONGRESS ATTENDANCE ...EVER!
1% 2% 2%
4% 4% 5%
Physicians
Other profession Exhibitor
42% Delegates from LMI Countries Undergraduate Students
VIP
Other (Press, Staff, Volunteer) Speaker/Chair/Award Winner
31% 69%
40%


Where our delegates came from:
3.99%
North America
81.61%
Europe
0.93%
Africa
6.88%
Asia
EAPC World Congress 2019
2.21%
South America
4.38%
Australia


EAPC World Congress 2019
Winner of the EAPC Photo Competition 2019
“Before I die I want to...” Board Berlin 2019 Poster viewing, Berlin 2019


EAPC World Congress 2020


Who attended?
1,112
Number of registered delegates
EAPC World Congress 2020
Profession of delegates:
Physician Nurse Physiotherapist Occupational therapist Psychologist Volunteer Researcher Chaplain/Spiritual care adviser Social worker Other


From 68 countries....
1 Jersey 11 Finland 1 Lithuania
31 Canada 47 USA
1 Dominica
1 Peru
EAPC World Congress 2020
Ireland 24 38 Denmark 2 Estonia Norway 15 45 Belgium 10 Poland
1 Russia
1 Palestine 10 India
Czech Republic 14 55 Germany 1 Bulgaria 29 Sweden 6 Romania
United Kingdom 158 Croatia 1
26 Switzerlan1d Malta
33 Austria
115 The Netherland4s Albania 2 Latvia
1 Moldova Portugal 163F0raSnpcaein23 135 Italy 1 Armenia
4 Hungary 5 Slovenia
3 North Macedonia
1 Egypt 3 Georgia 2 Turkey
2 Mexico
3 Greece
1 Sudan 1 Jordan
2 Israel
5 1 Thailand
South Korea 37 Japan
2 Ghana
5 Nigeria
2 eSwatini 1 Zimbabwe
6 Taiwan 9 Singapore
1 Malaysia
1 Indonesia
6 Uganda
2 Rwanda 1 Kenya
7 Brazil
1 Chile
1 Uruguay
1
1 Mozambique South Africa
51 Australia New Zeland 10
1 Argentina
43 Not Available


EAPC Research:
RESEARCH:
We are pleased to report that the EAPC Research Network and the EAPC continue to provide a platform to foster the growth of high-quality international research and dissemination of findings.
EAPC Research Network:
EAPC RESEARCH NETWORK SUMMARY REPORT 2019 – 2020
Augusto Caraceni, Geana Kurita, Luc Deliens
The EAPC RN activities during 2019 – 2020 were focused on two main objectives: the organisation of the EAPC World Research Conference 2020 and research promoting, policy, networking and dissemi- nation.
The organisation of the EAPC World Research Congress, originally planned for Palermo, was severely impacted by the global pandemic and was reorganised in an online format. The good will and the resilience of everyone from the EAPC, the Scientific Committee and the EAPC RN in this effort cannot be underestimated and will remain long in the memory of those who lived with it.
The EAPC RN continued to work and make the EAPC visible as a stakeholder in several specific European projects. In addition, work commenced on re-establishing the Junior Forum:


EAPC RESEARCH NETWORK SUMMARY REPORT 2019 – 2020
Augusto Caraceni, Geana Kurita, Luc Deliens
1.
3.
The second International Research Seminar on Public Health and Palliative Care of the EAPC Research Network was jointly organised with the EAPC Reference Group on Public Health and Palliative Care (17-18 November 2020).
The seminar was originally planned in Belfast but due to the pandemic was reformatted as an online seminar with the title “Public Health Research in Palliative Care: Towards Solutions for Global Challenges “ The seminar was hosted by All-Ireland Institute of Hospice and Palliative Care (AIIHPC); 122 delegates attended. The abstracts of this seminar were accepted for publication in the journal Palliative Care & Social Practice 2021, Vol. 15: 1–33 DOI: 10.1177/ 26323524211003703.
The RN coordinated two tasks on Palliative Care Integration and Pain control within the European Union Joint Action Innovative partnership for action against cancer (iPAAC).
An iPAAC – EAPC joint meeting was held at the 11th EAPC World Research Congress (7th October 2020) with the participation of the International Association for the Study of Pain, the Organization of European Cancer Centers (OECI) and the European Cancer Patient Coalition to share and support iPAAC palliative care recommendations for cancer control.
A close collaboration has been established between Public Health and Palliative Care International and EAPC RN. EAPC RN co-chair, Luc Deliens has joined the council of PHPCI. It has also been agreed that the End-of-Life Care Research Group in Belgium will be hosting the next PHPCI 2022 world congress in 2022 in Bruges, Belgium, supported by EAPC RN and the EAPC Reference Group on Public Health and Palliative Care.
4. In 2020, work commenced on re-establishing the EAPC Junior Research Forum (JF). This is an international platform for junior researchers in palliative care that provides an opportunity to meet, learn and have access to training opportunities via the EAPC Research Network. The Junior Forum is coordinated by Geana Kurita (vice Chair of EAPC RN )
The Junior Forum has:
• Commenced work on developing a database of interested members
• Organised a JF session at the 11th EAPC World Research Online Congress 2020
• Started planning for the JF session at the 17th World Congress 2021
• Reactivated the JF Facebook page. Content is kindly posted by Avril Jackson (Social Media Lead and Editor of EAPC blog)
• Developed a proposal for the EAPC board about the activities and organisation of the JF that includes suggested core activities based on JF members’ requests.
2.
The RN collaborated with the Organization of European Cancer Institutes (OECI) in establishing coordinated action about the strategies of Implementation of PROMS and PREMs in Oncology Clinical Practice and Research. A task force and a meeting have been planned for 2021. A commentary on the European Commission Cancer Mission was published in the Lancet Oncology (Caraceni A. and Apolone G. «Conquer Cancer for everyone?», Lancet Oncology 2021)


EU-Funded Projects
EUROPEAN UNION-FUNDED PROJECTS
In 2019, the EAPC finalised work on the Erasmus-funded project, EDUPALL, which was complete.
MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems.
Palliative Sedation – The use of proportional palliative sedation for the relief of refractory symptoms: an international multi-center study.
Additionally, in 2019, the EAPC commenced work on three European Union-funded H20202 projects. The primary role of the EAPC in these projects is as a dissemination partner.
These projects are DIAdIC – Evaluation of Dyadic Psychoeducational Interven- tions for People with Advanced Cancer and their Informal Caregivers (DIAdIC): An international randomized controlled trial.


EU-Funded Projects
EUROPEAN UNION-FUNDED PROJECTS
These projects all commenced in January 2019 and work continued on these throughout 2020.
In late 2020, the EAPC commenced work as a partner on two further Erasmus-funded projects:
NursEduPal+ Palliative Care Core Competencies and novel European matrix for educating bachelor-degree nurses
RESPACC – Research for all palliative care clinicians


EAPC on social media 2019 and 2020
COMMUNICATION AND INFORMATION EXCHANGE:
The EAPC social media activities, including Facebook, Twitter, LinkedIn and our blog, have continued to provide a platform for the exchange of information, opinions and news. These media aim to increase interaction with our members and the wider palliative care community. Blog posts are normally posted twice per week and have established a strong following. They cover the whole spectrum of palliative care topics and are all published in English, with eight posts also translated into French in 2019 and 2020.


31 December 2020
7,871
Twitter followers
6,885
Twitter followers
14.32%
6,843
Facebook followers
6,638
Facebook followers
3.08%
4,216
LinkedIn members
31 December 2019
3,583
LinkedIn members
620
Instagram followers
280
Instagram followers
1,649
Blog subscribers to email alert
1,420
Blog subscribers to email alert
16.12%
Increase over past year
17.66% 121.42%
Twitter followers
Facebook followers
LinkedIn members Instagram followers
Blog subscribers to email alert


Follow us:
@EAPCvzw
European Association for Palliative Care – EAPC LinkedIn
EAPC blog | www.eapcnet.eu
EAPC.Vzw EAPC.vzw


Our Thanks
OUR OFFICIAL JOURNALS
The EAPC is grateful for the continuing support of our two official journals:


Our Thanks
OUR MEMBERS
• Board
• EAPC Groups
• Social Media Team
• Head Office staff
• Our supporters ... delegates and attendees at our congresses, the many contributors to our blog
THE EAPC HEAD OFFICE TEAM
Julie Ling, Chief Executive Officer
Avril Jackson, Social Media and Communications Officer (Part-time) Cathy Payne, Project Officer (Part-time) (October 2018 onwards) Claudia Sütfeld, Congress Coordinator (Part-time) (2017 onwards) Bernadette Pirihi, Accounts Support (Part-time) (August 2020 onwards) Eleanor Blake, Administrator (Part-time) (2017-May 2020)
©European Association for Palliative Care vzw Luchthavenlaan 10, 1800 Vilvoorde, Belgium
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EUROPEAN ASSOCIATION FOR PALLIATIVE CARE
One Voice, One Vision in Palliative Care
ANNUAL REPORT
2019/2020