Appendix E: National PELC Strategies

[ Table of Contents ]

1. Australia

Australia's palliative care strategy was launched in 2000 as a partnership between the Federal, State and Territory Health Departments, palliative care service providers and community-based organisations throughout the country. It was accompanied by a National Program which invested AUS$285M primarily to improve service delivery and professional training. The Strategy had three overarching objectives: (1) Awareness and understanding; (2) Quality and effectiveness; and (3) Partnerships in care. Research was integrated into the overall strategy as Objective 2.5, "To promote, support and implement the results of ongoing research into client care needs, best practice palliative care, service delivery models and resource allocation models"1. Key elements in the research strategy were research coordination, development of collaborative research capacity, knowledge translation, and developing a research culture within the palliative care service system.

The National Health and Medical Research Council (NHMRC) was charged with providing the resources to support PELC research, and it has subsequently held three funding rounds in its Palliative Care Research Program2. Round one, held in 2001, committed AUS$2M to grants, PhD studentships, and workshops. Round two, in 2003, committed the same amount for grants and training awards. Round three committed $4.2M from 2006 to 2010, and is more strategic in focus, emphasizing capacity-building through Research Development Grants "to provide opportunities for emerging investigators and research teams to build capacity and foster the potential to develop significant careers in palliative care research." Twelve of these grants were awarded, and additional grants were awarded in four priority sub-areas of PELC research, in addition to further training awards. Accordingly, NHMRC's support for PELC research has risen from $502,000/year in 2000 to $2,350,000/year in 2008.

A report3 on the first round of funding concluded: "While each individual project has contributed to the evidence and knowledge base for palliative care, the program itself has made a significant contribution to the development of the research infrastructure for palliative care. It has provided researchers and clinicians with an opportunity to not only participate in national level research but to extend their research expertise. The program has also highlighted the diversity of the research approaches that can be applied within palliative care. Finally, the National Palliative Care Research Program has accorded palliative care research a status that will contribute to and enhance its long-term development."

Of all the national strategies reviewed, this has the most potential to improve palliative care because it integrated research into the overall strategy, and combined research funding with significant funding for service improvement. Whether the synergies that could potentially result from a coordinated research and service-improvement strategy have been realised is as yet unclear.

2. New Zealand

The objectives of the New Zealand (NZ) strategy4, introduced in 2001, were entirely pragmatic and service-oriented. Research was not a major component of the strategy: the emphasis was on applying in practice what was already known from research conducted elsewhere. However, the strategy noted that palliative care service providers should engage in "undertaking/participating in palliative care research activities.", and in a list of issues pertaining to palliative care in NZ, it was noted that:

"There is a need for more research or the application of overseas research in palliative care:

  • so that palliative care is regarded as a credible alternative to other forms of treatment
  • to develop an evidence base that can influence practice
  • to provide assurance to consumers that services are safe and valid."

However, we were unable to find evidence of any investment by the NZ Health Research Council in PELC research when we searched its 2006-08 awards database using PELC-related keywords. No evaluation of the strategy has been conducted.

3. United Kingdom

In 2002, the National Cancer Research Institute (NCRI) found that research into supportive and palliative care accounted for only about 4% of the investment in cancer research (incidentally the same percentage as CIHR's in 2008-095), which stimulated the formation of a Strategic Planning Group on Supportive & Palliative Care (SuPac). Its 2004 report noted that more collaboration and interdisciplinary research was needed. In response, in 2006 a consortium of NCRI Partners funded two Supportive and Palliative Care Research Collaboratives6. A 'Capacity Building Grant Scheme' to ensure support for clinical researchers currently outside the successful collaboratives was also launched, and £830,000 was awarded to 11 investigators and clinical professionals. Total funding commitment for the "SuPaC" initiative was approximately £7.25M (approximately CAD$12M), and the initiative was operated by the Marie Curie Foundation. Reporting on their experiences of the initial years of operation of the two Collaboratives, the PIs wrote: "Despite substantial progress achieved, the future development of the collaboratives still feels fragile, relying heavily on good will and on the belief that successful experience of collaboration will convince members to take the risks of venturing outside of comfortable peer groups and of sharing ideas and resources."7 The SuPac initiative is currently under review.

Building on this action from the voluntary agencies, the UK Department of Health published a strategy report in 20088, which includes a commitment to "enhance research into end-of-life care, especially for those with conditions other than cancer." The report notes: "Research funders are exploring the potential for collectively contributing funding towards a national research initiative on end-of-life care." However, Cancer Research UK, the largest charitable funder of cancer research, has announced as part of its strategic plan for 2009-14 that it will discontinue funding for palliative and end-of-life care: "We have identified for ourselves a niche in understanding the disease and in the middle of the 'basic-to-clinical' research spectrum. We will therefore focus our research on the understanding of cancer, through to the treatment of cancer9."

4. United States

The National Institutes of Health (NIH) appears to lack a coordinated strategy for palliative care research. The National Cancer Institute (NCI) funded an initiative on Reducing Barriers to Symptom Management and Palliative Care in 2004, funding 15 projects at about $5.2M/year. It also featured palliative care prominently in its 2006 strategic plan10. NCI has a Palliative Care Working Group and advertises numerous funding opportunities through which PELC could potentially be funded11, and there is currently a joint NCI/National Institute of Nursing Research (NINR) RFA available "to develop and test interdisciplinary interventions to improve palliative care and enhance the quality of life for dying patients and their informal caregivers" with a budget of $2M12. Palliative Care is not mentioned in NCI's current budget request13.

The other American Institute with major interests in PELC is NINR, designated NIH's lead Institute for end-of-life care. NINR's End-of-Life program "focuses research on: palliative care to alleviate pain and related symptoms; advance directives; and family decision-making.14" In December 2004, NINR and partners held an interdisciplinary State-of-the-Science Conference on Improving End-of-Life Care, and published a consensus report on knowledge gaps and future directions for research15. NINR funded two Centers of Excellence in Self- Management or End-of-Life Research in 2007, intended to foster the emergence of PELC as an interdisciplinary science and increase collaboration.

Using NIH's grants database, CRISP (no financial data provided), we detected a total of 66 awards in the field of PELC in 2008, out of a total of 53,676 (i.e. 0.1%). The principal Institutes funding the awards were NCI (31), NINR (12), and the National Institute on Aging (10). Additional federal support for PELC comes from the Agency for Healthcare Research and Quality, which currently supports 28 PELC research projects.

This brief survey is corroborated by a 2008 study16 reporting on all USA publications in palliative care between 2003 and 2005. A total of 2,197 investigators were identified (compared to ~1090 for Canada in 2006-08 identified in this report), and for those papers where funding sources were acknowledged, in 31% NIH was the source, 51% acknowledged foundations, and 16% obtained funding from other sources. Only 109 (5%) investigators received NIH funding, and the National Cancer Institute (NCI), National Institute of Nursing Research (NINR), and National Institute on Aging (NIA) funded 85% of all NIH awards. The study concluded "Research funding, particularly federal funding, for palliative medicine research is inadequate to support improvements in care for the most seriously ill patients and their families."

5. Canada

The Canadian Strategy on Palliative and End-of-Life Care was launched in March 2002, when a Health Canada secretariat hosted a National Action Planning Workshop on End-of-Life Care. Five working groups were established, including one on research. The Strategy had its budget of $1.3 million slashed by more than 50% in FY 2006-07 following a change in government, despite protests from many stakeholders, and it ended in March 2007. The accomplishments of the research working group were rather modest, as set out in the final report17 on the Strategy:

  1. It "facilitated" the development of a virtual network of PELC researchers, hosted on the site of the Canadian Virtual Hospice. This site continues to flourish and expand, supported by a number of funding partners, most recently the Canadian Partnership Against Cancer.
  2. It held a Fall 2005 meeting on KT, leading to the formation of an independent steering committee to develop a framework and tools to guide future knowledge translation activities in PELC. The fate of the committee is unknown.
  3. In February 2005, it established the Canadian Network for Palliative and End-of-Life Research beyond cancer (CaNPERbc) to support those researchers working in fields of terminal illness other than Cancer. This network no longer appears to be functioning.
  4. Perhaps most significantly in the long term, with funding from the RWG, the CIHR established the PLC peer review committee (Appendix B) to review PELC applications to its twice-annual open operating grants committee.

The successes of the chronically-underfunded Canadian Strategy in other areas, such as helping to develop an accreditation process for care facilities, were achieved mainly through working with NGOs and professional organizations. As in all "national" health strategies in Canada, the effectiveness of any federal effort in attempting to improve palliative or any other form of health care is compromised by the fragmented provincial and territorial responsibility for health care delivery, and the difficulties of federal-provincial relations.

Recently, in an April 2009 report18, a Special Senate Committee urged the federal government "to provide leadership and coordination on the issue of palliative and end-of-life care", and also recommended "that Canadian Institutes of Health Research funding for palliative care be renewed beyond 2009."

6. European Union

While it is not strictly accurate to write about a coordinated EU Strategy, there have been important pan-European developments since a 2006 publication19 bemoaned the sad state of PELC in Europe: "Only one European country, the UK, has taken a national initiative to stimulate and promote palliative care research ….There are few European research groups in palliative care reaching a critical size, several countries do not have academic chairs in palliative care, and there is no clear trend that chairs are emerging in general. There is little public funding for palliative care research." A 2008 paper20 noted that capacity-building, particularly for clinician-researchers, was essential and that "successful collaboratives need to receive predictable, sustainable funding."

However, the European Association for Palliative Care has established an active Research Network, the European Palliative Care Research Collaborative, involving researchers from six nations was funded from the EU 6th Framework program in 200621. A second network, PRISMA or "Reflecting the positive diversities of European priorities for research and measurement in end-of-life care" involving eight nations, was funded from the 7th framework in 200822. Building on the strengths of PELC at the University of Trondheim, Norway, a European Palliative Care Research Centre will be established there, funded from Norwegian, Italian and industry sources23. Collaborative PELC research in Europe seems poised for significant evolution and growth.

End Notes

  1. The National Palliative Care Strategy - A National Framework for Palliative Care Service Development - October 2000
  2. Palliative Care Research Program
  3. David Currow and Jennifer Tieman “Phase One of the National Palliative Care Research Program: Summary Paper” April 2005
  4. NZ Ministry of Health “The New Zealand Palliative Care Strategy”
  5. Using the CIHR public funding database, all funding assigned to ICR was $76M:of this, the subset retrieved with the key words “palliative” or palliatif” was $3.1M
  6. NCRI “Supportive and Palliative Care Research Collaboratives”
  7. Sheila Payne, Julia Addington-Hall, Alison Richardson and Michael Sharpe “Supportive and palliative care research collaboratives in the United Kingdom: an unnatural experiment?” Palliat. Med; 21; 663 (2007)
  8. UK Department of Health “End-of-life Care Strategy - promoting high quality care for all adults at the end-of-life”
  9. Cancer Research UK “The focus of our research - scientific quality and clinical impact”
  10. NCI - The NCI Strategic Plan for Leading the Nation to Eliminate the Suffering and Death Due to Cancer
  11. Funding for Symptom and Palliative Care Research - National Cancer Institute
  12. NIH RFA-NR-09-004 “Interventions to Improve Palliative Care at the End-of-life”
  13. The Nation's Investment in Cancer Research: A Plan and Budget Proposal for Fiscal Year 2010
  14. Department of Health and Human Services - National Institutes of Health: Fiscal Year 2009 Budget Request
  15. The National Institutes of Health (NIH) Consensus Development Program: National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care
  16. Gelfman LP, Morrison RS. “Research funding for palliative medicine.” J Palliat Med.11(1):36-43 (2008)
  17. Canadian Strategy on Palliative and End-of-Life Care - Final Report of the Coordinating Committee, 2007
  18. Special Senate Committee on Aging Final Report “Canada’s Aging Population: Seizing the Opportunity ”, 2009
  19. Kaasa S, Hjermstad MJ, Loge JH.”Methodological and structural challenges in palliative care research: how have we fared in the last decades?” Palliat Med.20:727-34. (2006)
  20. S, Radbruch L. “Palliative care research--priorities and the way forward.” Eur J Cancer. 44:1175-9 (2008).
  21. EAPC Research Network
  22. European Palliative Care Research Collaborative
  23. Medical News Today - European Association For Palliative Care Announces The Foundation Of The European Palliative Care Research Center