Appendix D: The Initiative’s planning process and results
[ Table of Contents ]Definition(s) of palliative care
In most Canadian health care systems, "palliative" and "end-of-life" care are functionally synonymous: "Palliative care is defined as for those whose expected prognosis is less than three months. Most die in fact in less than three weeks of entering the system. A large proportion die within 48-72 hours." (NET decision-maker partner). Most of the palliative caregivers with whom we talked find this definition too limited and believe palliative care should start at the time of diagnosis of an incurable disease, and were thus making efforts to extend the definition and provision of palliative care services to people dealing with a variety of chronic disease and long-term illnesses1,2. We do not intend to address this definitional debate, but recognize throughout the report and its appendices that different respondents have used the term in their own way, and usually with a broader scope of meaning than is officially recognized, even by the World Health Organization (WHO) definition.
ICR's priority-setting process
The origins of the Initiative stem from a Delphi process conducted in 2001-02 by an alliance of the National Cancer Institute of Canada (NCIC), the Canadian Association of Provincial Cancer Agencies (CAPCA), Health Canada and the Institute of Cancer Research (ICR). This generated a list of research priorities that was discussed by the Institute Advisory Board (IAB) of ICR in May 2002, and, when the members voted for their top priority on the list, PELC came to the fore.
PELC was an important public and political issue at the time, thanks to the efforts of Senator Sharon Carstairs, culminating in a Senate report released in 20003. This led to the formation of a dedicated Health Canada Secretariat in June 2001, and a Canadian Strategy on Palliative and End-of-Life Care, complete with a Research Working Group, in Spring 2002. The Institute's Board felt that this was an area of research that dealt with an area of health care where there was a high level of public concern, and that ICR was well positioned to respond to it. In addition, PELC issues needed to be addressed from across all four of CIHR's research themes, and so the CIHR leadership hoped it would be a good "poster child" for the new CIHR way of doing health research4. ICR also saw the opportunity to enhance intersections with other clinical disciplines, such as cardiology, respiratory medicine, critical care, nephrology, pediatrics and neurology.
Planning the Initiative
This section describes and assesses the strategies and processes involved in designing and executing the Strategic Initiative (SI), including: the development of its objectives, and their relationship to the chosen funding schemes; the roles and expectations of users and funding partners; the opinions of those involved in what worked well and what didn't in the planning and execution; and the alignment of the PELC-SI with the Canadian Strategy and a comparison with other national strategies. It relies mostly on the views of those involved in the Initiative and a review of the documentation available on the websites of CIHR, Health Canada and other national and international PEOLC-related organizations.
"The process of developing the initiative went extremely well; ICR did a masterful job of supporting it." A Working Group member
"ICR has highlighted for me the importance of not just putting $ into things, but also being involved in the on-going activities." Another CIHR Institute staff person
"They should be very proud of what they've done." CEO of a knowledge user organization
"ICR has done a good job with PELC, even with so many partners in the initiative. They asked for feedback on the end-of-grant reports – this is just the kind of thing we really like." A funding partner
"I like the way this started with the ICR prioritization process. It was broad-based and collaborative. They ran with what the community said. There were collaborative efforts within CIHR and partners to get a broad view. To my mind, it was a great success. The package of different programs and the PLC peer review committee covers all the bases." Another federal agency
"I want to strongly commend CIHR for being a leader, taking it (PELC) on the way it did" A knowledge user
Once ICR defined PELC as its top priority in 2002, it set up a Working Group to develop a plan for the Initiative for presentation to its IAB in early 2003. The Working Group was chaired by Neil MacDonald, and consisted of leading researchers in various aspects of PEOLC. There were also two members from Health Canada. The working group met four times, all by teleconference apart from the first meeting, between July and December 2003. In addition, an augmented Working Group, including representatives from some partner Institutes and NGOs, was held in November 2003. Recurrent themes in working group discussions included:
- Building research capacity in PELC research. This meant both developing new researchers through training programs, and attracting existing researchers into this field. This was the over-riding concern, and it won a prolonged debate about whether to use one particular funding vehicle, New Emerging Teams (NETs), which emphasized team-building, over another, Interdisciplinary Capacity Enhancement Grants, which emphasized knowledge translation5.
- Clinical trials and their ethics review, an issue that fell off the table in later meetings as attention focussed on the practicalities of the upcoming funding programs.
- Persuading CIHR's Research Portfolio to establish a specialized peer review committee for review of PELC applications submitted to the open operating grants competition. It was felt that existing committees lacked the range of cross-disciplinary expertise that was required for expert review of applications in this area, and this was a deterrent to researchers wanting to enter the PELC area. The intense lobbying for such a committee resulted in the establishment of the PLC peer review committee for the September 2005 and subsequent competitions.
- Recruitment of partners to assist in funding research supported through the initiative. We must note the absence of partner representation on the working group, and that the records show that partners appear to have been contacted relatively late, at a time when the format and scope of the Initiative was already solidified. For example, a meeting with NGOs to discuss their participation was being planned for early 2003, at a time when ICR had already decided to launch the NETs opportunity in May 2003. In the future, "it's important to have the players there for planning, to bring an idea of how the results would be implemented," funding partner.
- Coordination with the Health Canada-run Research Working Group, part of the Canadian Strategy on Palliative and End-of-Life Care. Eventually, the ICR and the Health Canada research working groups combined and became the National Working Group on Palliative Care, co-chaired by ICR and Health Canada. The joint Working Group continued to meet, and began to develop a long-term strategy, but, presumably because of continued uncertainty about further dedicated funding, this effort lost momentum.
- Development of infrastructure, meaning national networking of the fragmented and isolated PELC research community. A joint workshop on this topic was held in February 2003 with the Health Canada group, and proposed the creation of a national network6, and subsequently a business plan was developed. Unfortunately, this was never realised, due to failure to identify a source of support for the significant funding required to operate such a network, though some of the internet-based facilities envisioned at the workshop now exist in the Canadian Virtual Hospice7. "We had the idea of a Net of NETs. We tried to pull it together several times. A couple of events were fairly successful – a lunch or two at significant meetings generated enthusiasm, but it faded as energies focused elsewhere. There must be some enthusiasm at corporate level to back this stuff if it's going to happen," A researcher.
- Broadening the definition of PELC research, both with respect to non-cancer health problems, and to the types of topics that would be fundable under the initiative. This broadening was important in recruiting other CIHR Institutes to participate in and fund the Initiative. Eventually, eight other CIHR budget authorities participated, along with Health Canada, three provincial cancer agencies, and four charities8.
Partners Supporting Palliative and End-of-Life Care Research
- Alberta Cancer Board
- British Columbia Cancer Agency
- Canadian Breast Cancer Research Alliance
- Cancer Care Manitoba
- CIHR Institute of Aboriginal Peoples' Health (IAPH)
- CIHR Institute of Aging (IA)
- CIHR Institute of Cancer Research (ICR)
- CIHR Institute of Circulator and Respiratory Health (ICRH)
- CIHR Institute of Gender and Health (IGH)
- CIHR Institute of Health Services and Policy Research (IHSPR)
- CIHR Institute of Human Development, Child and Youth Health (IHDCYH)
- CIHR Institute of Neurosciences, Mental Health and Addiction (INMHA)
- CIHR Knowledge Translation Branch
- Health Canada
- Heart and Stroke Foundation of Canada
- National Cancer Institute of Canada
- National Ovarian Cancer Association
The Funding Schemes
“In retrospect, it was a bit of a gamble. We were working with the ‘if you build it, they will come’ theory, which was untested at that time.”
WG member
Following approval by the ICR Board in early 2003, the Requests for Applications for the Initiative were announced in June, 2003. Overall, the objectives of the Initiative were "to support infrastructure development, enhance interdisciplinary research collaboration, encourage the development of early career researchers and attract trainees to this emerging area."8 These objectives were to be achieved through three forms of research support, all oriented towards the imperative for capacity-building that was foremost in the deliberations of the Working Group:
- New Emerging Teams (NETs)
- Pilot Project grants (PPG)
- Career Transition Award (CTA)
The results of the three competitions are shown in Table 2.2. The high application numbers were evidence of the interest in this area among investigators, except for the CTA where the number of applications was disappointing. Success rates in all of the competitions were significantly higher than in CIHR's open grants competition. The full list of those funded under each of the three elements is included below.
Table 2.2 Competition Results
| Program | Applications | Funded | CIHR spend | Start date |
|---|---|---|---|---|
| NETs: letter of intent | 22 | 17 | $64,053 | 2003-10-01 |
| NETs: full application | 17 | 9+1* | $12,670,356 | 2004-07-01 |
| Ppg | 51 | 20 | $1,096,457 | 2004-01-01 |
| Cta | 2 | 1 | $92,850 | 2004-02-01 |
* from another competition
Pilot Projects
| Principal Investigator | Institution Name | Project Title |
|---|---|---|
| Alibhai, Shabbir | University Health Network | A pilot study to evaluate quality of life in patients age 60 or older with newly diagnosed acute myeloid leukemia |
| Aubin, Michèle | Université Laval | Évaluation d'un programme de soulagement de la douleur chez les personnes âgées en perte grave d'autonomie vivant en milieu de soins de longue durée : projet pilote |
| Baracos, Vickie | University of Alberta | Nutritional supportive care: amino acids required to support maintenance and deposition of lean body mass in patients with advanced cancer |
| Barbera, Lisa | Sunnybrook and Women's College Health Sciences | Palliative and end-of-life quality indicators in lung cancer |
| Duggleby, Wendy | University of Saskatchewan | A pilot study of the hope focused program for informal caregivers of palliative home care patients |
| Fassbender, Konrad | Alberta Cancer Board | Patterns and predictors of palliative care service utilization |
| Gagnon, Bruno | McGill University | Characterizing cognitive failure, physical retardation and hypo-active delirium in advanced cancer patients, a pilot project |
| Grunfeld, Eva | Dalhousie University | Quality indicators for end-of-life breast cancer care: is there agreement between stakeholder groups in two provinces? |
| Grunfeld, Eva | Dalhousie University | Quality indicators for end-of life breast cancer care: testing the use of administrative databases in two provinces |
| Hampton, Mary | University of Regina | Developing and piloting cross-cultural curriculum for delivery and utilization of end-of-life health care services |
| Kiceniuk, Deborah | Dalhousie University | An examination of end-of-life health care costs in Nova Scotia |
| Leis, Anne | University of Saskatchewan | Prevalence of palliative patients and their health services utilization in Saskatchewan: A feasibility study |
| Schondorf, Ronald | Sir Mortimer B. Davis Jewish General Hospital | Does autonomic nervous system dysfunction contribute to the morbidity of patients with advanced gastrointestinal and non small cell lung cancer? A pilot study |
| Simpson, John Steven | University of Calgary | A pilot project to assess the impact of a novel psychosocial intervention on the quality of life, attitudes to death and dying, and spirituality of palliative cancer patients |
| Vigano, Antonio | McGill University | Prognostic value of the angiotensin-converting enzyme gene polymorphism in advanced cancer: A pilot study |
| Viola, Raymond | Queen's University | Community palliative cancer care - A pilot study using linked databases |
| Ward-Griffin, Mary | University of Western Ontario | Exploring client-family-nurse relationships in home-based palliative care for seniors |
| Widger, Kimberley | IWK Health Centre | Pediatric palliative care surveillance pilot project |
| Wing, Simon | McGill University | Role of lysosomal proteolysis in mediating the muscle wasting of cachexia |
New Emerging Teams
| Principal Investigator | Institution Name | Project Title |
|---|---|---|
| Allard, Pierre | Elizabeth Bruyère Research Institute, Ottawa | Optimizing end-of-life care for seniors |
| Baracos, Vickie | University of Alberta | New Emerging Teams in palliative care: Cancer-associated cachexia-anorexia syndrome |
| Chochinov, Harvey Stienstra, Deborah |
University of Manitoba | End-of-life care and vulnerable populations (VP-NET) |
| Doll, Richard Kazanjian, Arminée |
British Columbia Cancer Agency | Palliative care in cross-cultural context: A NET for equitable and quality cancer care for ethnically diverse populations |
| Gagnon, Pierre | Université Laval | Developing, evaluating and implementing new interventions in palliative care |
| Hagen, Neil Fainsinger, Robin Brasher, Penelope |
University of Calgary | A multidisciplinary cancer pain research network to improve the classification, assessment, and management of difficult cancer pain problems |
| Heyland, Daren | Kingston General Hospital | Understanding and improving communication and decision-making at the end-of-life (CARENET) |
| Kirk, Peter Lau Francis |
University of Victoria | Overcoming barriers to communication through end-of-life and palliative transitions (VPRN-NET) |
| Siden, Harold | University of British Columbia | Transitions in pediatric palliative and end-of-life care (PedPal NET) |
| Stajduhar, Kelli Cohen, S. Robin |
University of Victoria | Family caregiving in palliative and end-of-life care: A new emerging team |
Other grants and awards
| Cohen, S. Robin | University of Victoria | Strategic Training Program grant: Palliative Care Cancer Research |
| Wismer, Wendy | University of Alberta | Career Training Award: Dietary patterns, perceptions of food and motivation to eat in palliative care cancer patients |
| Williams, Allison | McMaster University |
Interdisciplinary Capacity Enhancement (ICE) Grant: Timely access & seamless transitions in rural palliative/end-of-life care |
RFA Evaluation criteria
We consider that the broad general objectives of the Initiative, which relate to capacity-building, have been met, but it is not yet time to consider PELC "done."
1. New Emerging Teams (NETs): to support the creation of new teams or the growth of existing research teams for a period of up to five years, supported by up to $300,000 per annum.
| Program Objectives9 | Expected Outcomes | Outcome Measures | Impacts found |
|---|---|---|---|
| Foster cross-theme research in palliative and end-of-life care with an emphasis on a multidisciplinary approach | Multidisciplinary and cross-theme research in palliative and end-of-life care |
Multidisciplinary and cross-theme nature of operating grant applications and subsequent publications Awardees opinion on the effectiveness of the program to foster multidisciplinary and cross-theme research |
Excellent multidisciplinarity in teams Sustainability of teams approach is at risk Significant increase in collaborative publications Strong endorsement of NET mechanism |
| Create a team environment that favours the development of excellent and innovative research projects that will advance our understanding of palliative and end-of-life care | Increased quality and productivity of award recipients in area of palliative and end-of-life care |
Applications to operating grants and success rate Knowledge translation activities (publications, patents, colloquia) |
Significant increase in other CIHR operating fundings Excellence of projects still premature to judge, but increased publications suggest work of NETs is of high quality Very significant level of KT activities undertaken, though much remains to be done |
| Train and establish new investigators capable of undertaking research relevant to understanding palliative and end-of-life care |
Increased number of trainees in palliative and end-of-life care Establishment of new investigators in palliative and end-of-life care |
Number of trainees within the teams New investigators that are integrated in the teams |
New investigators trained, many with accomplished clinical backgrounds in practical PELC, who will be able to apply research knowledge directly to care New investigators approve of NETs as advantageous environments Sustainability, career path of newly-built capacity is an issue |
2. Pilot Project Grants (PPGs), funded for one year at up to $100,000
| Program Objectives10 | Expected Outcomes | Outcome Measures | Impacts found |
|---|---|---|---|
| Promote innovative, pilot or feasibility studies in the area of palliative and end-of-life care | Development of new and innovative approaches to the research area of palliative and end-of-life care | Evaluation of the researcher's final report. Number of peer-reviewed publications | All recipients completed projects and published results. High degree of innovation and viability suggested by success of ~66% of recipients in obtaining operating grants based on pilot project work Good publication records post-grant |
| Allow researchers to develop the evidence necessary to determine the viability of new research directions in the area of palliative and end-of-life care | Increased numbers of successful applications to other grant programs | Numbers of projects that follow through to new applications for funding | Significant follow-on funding |
3. Career Transition Awards (CTAs) supporting up to 100% release time from teaching and administrative responsibilities by a one-year award of up to $80,000.
| Objectives11 | Outcome | Measure / Indicator | Impacts found |
|---|---|---|---|
| To increase the number of faculty in palliative and end-of-life care research. | A total of 2-5 new faculty in each of the indicated areas | Number and location of new faculty in each strategic area | Only 1 funded |
| Build expertise in a short period of time, 9-12 months | Time elapsed between issue of RFA and appointment of new faculty | Not new faculty, but new expertise | |
| To facilitate the transition and training of researchers, presently working in other disciplines, into the field of palliative and end-of-life care. Also to facilitate the, movement of researcher from within the palliative care field to gain experience in other situations, for example a researcher currently working in cancer who wishes to gain experience in cardiac care | Cross-disciplinary thinking | Disciplinary base of participants | Expanded |
| New knowledge | Publications by participants in strategic area during first three years of appointment | Year one good, follow-on not demonstrated | |
| Awareness of the interest and demand for career transition support | Interest of faculty in applying for this program Interest from Canadian institutions in supporting this program |
Interest from potential applicants very low Unknown |
Each of the program elements above included the statement "The CIHR Institute of Cancer Research and its partner organizations have made plans to assess performance of this initiative through ongoing monitoring and periodic evaluation. We are committed to informing Canadians about the performance of our initiatives and the results that they deliver." This commitment is the reason for this report, but we think it fair to note that the type of continuous and consistent evaluation framework that was anticipated when this initiative was launched has still not been implemented at CIHR.
End notes
- It has been estimated that in the USA the percentage of non-cancer patients receiving palliative care in hospices rose from 38% in 2000 to 50% in 2002. Grbich, C. et al. “Identification of patients with noncancer diseases for palliative care services” Palliative and Supportive Care 3: 5–14 (2005)
- Due to the advances in retroviral therapy, acute palliative care for those infected with HIV is now less in demand, but it has transformed into a longer-term support for individuals suffering from chronic disease and their families. Selwyn P and Forstein M “Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS” JAMA 290: 806-14 (2004)
- “Quality End-of-Life Care: The Right of Every Canadian”
- Remarks by Alan Bernstein, First meeting of the PELC Working Group, July 2002
- CIHR Interdisciplinary Capacity Enhancement (ICE) Teams Grant Program
- CIHR Institute of Cancer Research/Health Canada Palliative and End-of-life Care Research Networking Infrastructure Workshop Feb. 21-22, 2003
- Canadian Virtual Hospice
- ICR “A New Era in Canadian Palliative and End-of-Life Care Research”
- CIHR Palliative and End-of-life Care - New Emerging Team Grants, Request for Applications
- CIHR Palliative and End-of-life Care - Pilot Project Grants Request for Applications
- CIHR Palliative and End-of-life Care - Career Transition Awards