Seminar ‘Public Health Research in Palliative Care: Towards Solutions for Global Challenges’
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7th International Public Health Palliative Care Conference, November 2-5, 2021 Bruges Belgium
Palliative care and end-of-life care have come a long way in the past twenty years. We have seen a number of strategic shifts in thinking about what PC is, what it should deliver and to whom. From being a service historically designed to address the needs of advanced cancer patients in the last days or weeks of life, research evidence and best practice models of PC now suggest that there is an urgent need for early intervention across a spectrum of chronic life-threatening illnesses and that PC has the potential to contribute to the quality of dying and the quality of life in advanced illness and at the end of life. There is also an increasing awareness that in order to improve the circumstances surrounding dying we require public health approaches alongside health service approaches. These need to look at aspects of health beyond those within the mandate of healthcare services and also to engage actors other than just the health professionals involved in palliative care and end-of-life care.
Palliative care began with, and continues to focus on, tertiary level interventions that prioritise inpatient facilities and specialist service providers. A primary health care approach is in evidence in some parts of the world with extensive use of general practitioners or community nurses providing initial assessment and sharing responsibilities with specialists in providing adequate interventions. A population health approach to palliative care is the most under-developed angle at this stage of palliative care service development, yet it is the approach that has the most potential to enhance the quality of life and sense of wellbeing of the widest number of people in sickness and in health, in dying and in loss, and in all aspects of caring for one another. Interest in a public health approach to palliative care has been growing worldwide and this is evidenced by the international literature in the field, the organisation of conferences and the establishment a professional association (PHPCI).
Public health approaches involve:
- strategies for the planning and development of appropriate service provision in palliative care;
- strategies for the monitoring of the needs assessment, quality of palliative care and social equity at a population level;
- strategies for community involvement in health and wellbeing, including multiple experiences of death, dying, loss and care. This 'new' public health in palliative care is also known as health-promoting palliative care and involves organising public health actions in palliative care and evaluating their outcomes.
Aims and Objectives
The reference group on public health and palliative care brings together all the major public health initiatives in palliative care in Europe.
The main aim is to promote and improve palliative care via public health approaches and promote public health and health promotion as essential elements of national and international palliative care policies and strategies. It will also develop a network of public health researchers within the EAPC RN.
The core group of the reference group consists of key persons in research and/or policy with a clear public health background or public health research or policy profile.
Since its creation, the reference group has completed the following milestones:
- Developing and agree an annual work plan
- Developing a webpage on the EAPC website and associated websites
- Strengthening links with the WHO, PHPCI
- Establishing links with the former EAPC task forces on Volunteers and Family Caregivers
- At EAPC 2017 in Madrid:
- the first closed meeting of the reference group to agree about aims and milestones of the steering group
- the first meeting to establish the first public meeting of the public health network
- Promoting a public health stream in EAPC 2018 in Bern: this stream was integrated into the scientific program and made visual in the program booklet. The stream was applauded by many
- closed meeting on the 26th of May 2018 at the EAPC congress in Bern
- open meeting on the 24th of May 2018 at the EAPC congress in Bern
- Guidelines/documents for public health policy development, e.g. building on the WHO manual on how to implement palliative care and evaluate implementation, or building on the evidence from community development actions for palliative care
- Methods: Summary of WHO documents
- Outcome: Publication in the Springer Textbook of Palliative Care. (Maetens A., Cohen J., Harding R. (2018) A Public Health Approach to Integrate Palliative Care into a Country’s Health-Care System: Guidance as Provided by the WHO. In: MacLeod R., Van den Block L. (eds) Textbook of Palliative Care. Springer, Cham
- Actions and strategies for New Public Health approaches in end-of-life care research:
- Outcome: publication in the Springer Textbook of Palliative Care. Sallnow L., Paul S. (2018) New Public Health Approaches to End-of-Life Care. In: MacLeod R., Van den Block L. (eds) Textbook of Palliative Care. Springer, Cham
- Conferences covering the public health and end-of-life care domain (policy and research) --> e.g. embedded within EAPC RN seminars or an EAPC pre-conference
Outcome: The reference group organized the 1st International Seminar of EAPC RN and the EAPC Reference Group on Public Health and Palliative Care “Public Health Research in Palliative Care: Shifting the Paradigm”, 25 & 26 October 2018, Brussels
- Improving public health end-of-life care research using routinely collected data.
- Methods: review of evidence
- Outcomes: established Taskforce Big Data in End-of-Life Care Research; collaborating with Taskforce on systematic review. Review registered (see planning Taskforce)
- Workshop on Big Data and Palliative Care Research in Brussels 10-11 April 2018
- Workshop on Big Data and Palliative Care Research in Stockholm 6-8 February 2019
- Seminar “Community approaches to supporting health and well-being and end-of-life care in Older people with multimorbidities” hosted by Academic Palliative and Supportive Care Studies Group and funded by ESRC / NWSSDTP on the 22nd of February 2019 in Liverpool, United Kingdom, with presentations by:
- Prof. Luc Deliens: “Public Health and community approaches to supporting older people with co-morbidities”
- Prof. Allan Kellehear: “A public health approach to palliative care: creating compassionate communities"
- At the EAPC 2019 in Berlin:
- Open meeting of the RG on the 23rd of May 2019
- Open meeting of the Task Force Big Data on the 24th of May
- Closed meeting of the Task Force Last Aid on the 24th of May
- At the 6th Public Health Palliative Care International Conference, Fairmont Resort, Blue Mountains, NSW, Australia:
- Preconference workshop, Saturday the 12th of October 2019, 14:00-18:00 pm, Norman Lindsey room, Fairmont Resort Blue Mountains
- Closed meeting
Future objectives and milestones
- Exploring other possible links with international public health partners
- At the 11th EAPC World Research Congress 2020 7th to 9th October 2020: online exhibition space
- Online Seminar ‘Public Health Research in Palliative Care: Towards Solutions for Global Challenges’, 17 and 18 November 2020 by All Ireland Institute of Hospice and Palliative Care
Long term objectives
- Continue to develop a network and forum (e.g. newsletter, website, etc) of public health researchers in EAPC
- Promote training and educational development in public health and palliative care at both undergraduate and graduate levels
- Developing policy recommendations regarding public health and palliative care for international organisations
- Support and develop research opportunities in public health and palliative care across EU countries and beyond, e.g. international mobility in science, collaborative research actions, etc.
- Promoting and disseminating research methods in palliative care, e.g. editing a reader on “Research Methods on Public Health and Palliative Care”, organising preconference workshops, etc.
The reference group has its own newsletter that is sent out twice per year via e-mail - in March and in September. The newsletter is an accessible dive into the world of public health and palliative care. It offers news, reflections, policy and practice updates and overviews of existing projects and will keep you up-to-date with interesting events, calls and resources. The first issue was pubished on 25 March 2020.
EAPC Task Forces
The following Task Forces are supported by the Reference Group
Last Aid - Providing Palliative Care Education for Citizens
Big Data in End-of-Life Care Research
EAPC, EAPC research network, Public Health Palliative Care International(PHPCI), European Public Health Association (EUPHA), WHO, WHO collaborative centres in palliative care
The steering group will be self-financing. Each partner collaborates based on their own funding. A financial plan for independent financing of the group will be explored and developed and international funding will be explored and if appropriate applied for (e.g. COST, etc)
Samar M. Aoun (2020): Bereavement support: From the poor cousin of palliative care to a core asset of compassionate communities, Progress in Palliative Care, DOI: 10.1080/09699260.2019.1706277
Pivodic L., Cohen J. (2019) Public Health and Epidemiological Research in Palliative Care. In: MacLeod R., Van den Block L. (eds) Textbook of Palliative Care. Springer, Cham
Aoun SM, Breen LJ, Rumbold B, Christian KM, Same A, Abel J (2019). Matching response to need: What makes social networks fit for providing bereavement support? PLoS ONE 14(3): e0213367. https://doi.org/10.1371/journal.pone.0213367
Sallnow L., Paul S. (2019) New Public Health Approaches to End-of-Life Care. In: MacLeod R., Van den Block L. (eds) Textbook of Palliative Care. Springer, Cham
Maetens A., Cohen J., Harding R. (2018) A Public Health Approach to Integrate Palliative Care into a Country’s Health-Care System: Guidance as Provided by the WHO. In: MacLeod R., Van den Block L. (eds) Textbook of Palliative Care. Springer, Cham
Sallnow L, Tishelman C, Lindqvist O, Richardson H, Cohen J. Research in public health and end-of-life care – Building on the past and developing the new. Progress in Palliative Care, 2016, 24(1):25-30.
Complete list of publications
Policy & Social Action
World Health Organization. Planning and Implementing Palliative Care Services: A Guide for Programme Managers. World Health Organization. 2016.
The full report can be downloaded for free here
World Health Organization. Clinical management of COVID-19, interim guidance, 27 May 2020
The full report can be downloaded for free here
National awareness campaigns on palliative care:
Overview of tools and resources for building compassionate communities