Conference: Public Health Research in Palliative Care: Shifting the Paradigm
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” took place on the 25th and 26th of October 2018 in Brussels, Belgium. For a brief review of the seminar, please view this interesting article by participant Piret Paal from PMU Salzburg here.
Aims and Objectives
Short term objectives
- Develop and agree an annual work plan in the first meeting at EAPC Madrid
- To discuss public health issues within EAPC
- Develop a webpage on the EAPC website and associated websites
- Promote public health and health promotion as an essential element of national and international palliative care policies and strategies
- Strengthening the link with the WHO
- Strengthening the link with the PHPCI
- Strengthening the link with the conferences on public health palliative care (PHPCI, EUPHA, etc)
- Exploring other possible links with international public health partners
- Establishing links with the former EAPC task forces on Volunteers and Family Caregivers.
Long term objectives
- 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”, organise preconference workshops, etc.
Palliative care and end-of-life care has 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 next to health service approaches. These need to look at aspects of health beyond those within the mandate of healthcare services and also engage the different actors other than health professionals involved in palliative care and end-of-life care.
Palliative care began and continues to emphasise tertiary level interventions that emphasise 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 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 well being to the widest number of people in sickness and in health, in dying and in loss, and in all caring experiences toward one another. Interest in a public health approach to palliative care has been growing worldwide and this is evidenced in the international literature in the field, and in the establishment of conferences and a professional association (PHPCI).
Public health approaches involves:
- 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 on 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; organise public health actions in palliative care and evaluate the outcomes of it.
Preliminary Milestones to be confirmed at first meeting of the reference group in Madrid:
1. At EAPC 2017 in Madrid:
- first closed meeting of the reference group to agree about aims and milestones of the steering group
- first public meeting to establish the first public meeting of the public health network
- promote a public health stream in EAPC 2018 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: Establishing Workgroup
Outcome: guidelines published and made available through EAPC + publication in a PC journal
- A Conference 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
- Improving public health end-of-life care research using routinely collected data + Death Certificate data.
Methods: review of evidence + cross-national comparison of data quality and opportunities
- overview of strengths, weaknesses and opportunities across Europe of death certificate data and routinely collected data
- Recommendations to WHO on how to improve the death certificate for PC research/monitoring purposes
- Recommendations on establishing national palliative care registries
4. EAPC 2018, 10th World Research Congress, Bern
- Open meeting held to talk about the aims and goals of our group
- achievements so far
- priority issues in public health research in palliative care
- generation of ideas to guide research for a planned white paper.
EAPC, EAPC research network, Public Health Palliative Care International(PHPCI), European Public Health Association (EUPHA), International Collaborative on End of life Care Research (ICER), 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 possible applied for (e.g. COST, etc)