Canada’s Research Investment in - PowerPoint Presentation

1. Canada’s Research Investment in Palliative and End-of-Life Cancer Care, 2005–2021

2. The CCRA is an alliance of organizations that collectively fund most of the cancer research conducted in Canada – research that will lead to better ways to prevent, diagnose, and treat cancer and improve survivor outcomes. Members include federal research funding programs/agencies, provincial research agencies, provincial cancer care agencies, cancer charities, and other voluntary associations. Member are motivated by the belief that, through effective collaboration, Canadian cancer research funding organizations can maximize their collective impact on cancer control and accelerate discovery for the ultimate benefit of Canadians affected by cancer.The Executive Office is supported by the Canadian Partnership Against Cancer, funded by Health Canada to work with Canada’s cancer community to implement the Canadian Strategy for Cancer Control to reduce the incidence of cancer, lessen the likelihood of Canadians dying from cancer, and enhance the quality of life of those affected by cancer. The Partnership is committed to enhancing the cancer research environment in Canada through its support of the CCRA and CCRA’s role in coordinating the cancer research funding system. As a member and funder of the CCRA, the Partnership collaborates with other member organizations to enable the strategy for cancer research in Canada. Introduction2

3. Understanding the amount and nature of the research investment in palliative and end-of-life cancer care has been important to many of the CCRA members and strategic funding has been allocated to address the need to enhance research capacity.CCRA released a pan-Canadian research framework for palliative and end-of-life care research in 2017 to help prioritize research investment in this area.Why report on this investment?3

4. The Canadian Cancer Research Survey (CCRS) was the primary data source. This is a database of over 30,000 research projects funded by 45 governmental and voluntary sector organizations for years 2005 to 2021.4,345 projects coded entirely to CSO category 6 – Cancer Control, Survivorship and Outcomes Research, which includes an end-of-life care code, were reviewed and either excluded or included as part of the study sample. The final sample consisted of 709 projects, and these were coded on three dimensions: study population, research focus, and research type.“Cancer research investment” refers to the direct funding of research projects that were administered by organizations contributing data to the survey. All projects had received some form of peer review.Institutional affiliation of the nominated principal investigator (PI) was used for analyses based on geography (province).Methodology4

5. Palliative and end-of-life cancer care research classification5Definitions for the seven dimensions of “Research Focus” are provided on the next slide. This classification is also used for research projects related to cancer survivorship. For a full set of definitions, please consult the CCRS technical manual at https://www.ccra-acrc.ca/reports/.

6. Physiological effects: Studies identifying and managing specific late/long-term physical effects of cancer/cancer treatment (e.g., cardiovascular, respiratory, digestive, neurological, reproductive) on patients and symptoms such as pain, cachexia/anorexia, dyspnea, etc., associated with end of life. Psychological effects: Research identifying and managing specific psychological effects (for example, depression, anxiety, distress, fear of recurrence, intimacy issues) of survivorship/end of life for patients and family /caregivers. Quality of life: Research focused on a broad range of symptoms/outcomes rather than specific effects as identified under other foci. Includes projects focused on survivors and/or family/caregivers.Social needs/social support: Studies on the social support needs of survivors and family/caregivers. Economic sequelae: Studies of the economic effects of cancer for survivors and their families/caregivers. Research dealing with work/employment and vocational/educational issues are also included. Care delivery, access and quality: Research on the ways that post-treatment and end-of-life care are delivered/organized and effects on individuals and systems. Includes evaluative studies, research on optimal care models, studies on gaps/inequities in access, costs/cost-effectiveness of care, and quality of care. Thanatological issues Research on death/dying and the psychological mechanisms of dealing with death/ dying. Includes attitudes toward death, meaning and behaviours of bereavement and grief, and moral/ethical issues.RESEARCH FOCUS - DEFINITIONS

7. Investment for each project was based on a prorated calculation that assumes project dollars were paid out in equal monthly instalments in accordance with project start and end dates. Project funding was calculated for the period January 1, 2005 to December 31, 2021, and averaged to yield an annual amount.Project budgets were weighted to reflect the extent of relevance to palliative and end-of-life cancer care. A weighting of 80% was used for end-of-life care research that did not specifically identify a cancer patient population. This was based on Canadian experts’ estimates of the proportion of palliative and hospice care patients with a cancer diagnosis. End-of-life care research projects that focused on a non-cancer patient population were excluded from the study.Reporting Conventions7

8. There may be relevant research undertaken by cancer organizations and non-cancer organizations that do not participate in the CCRS. For the area of palliative and end-of-life cancer care, there may funding from large foundations and other organizations not captured in the CCRS that could affect the overall investment picture.Investment figures for British Columbia may under-represent the investment in palliative and end-of-life cancer care research for the province because the BC Cancer Agency and its Foundation do not contribute data to the CCRS. Given the attribution of the research investment to the location of the nominated principal investigator, geographic distribution of the investment represented herein may not be a fulsome account of where survivorship research has taken place.Caveats8

9. Over the 17 years, 2005 to 2021, $102M was invested in palliative and end-of-life cancer care research and this represented 1.2% of the overall cancer research investment.The investment from year to year was variable, from a maximum of $7.5M in 2007 to a minimum of $4.3M in 2021. The investment has been fairly stable since 2015.Investment from targeted programs represented 17% of the 17-year investment, with most of this occurring in the 2005 to 2009 period. Targeted programs appear to be important to sustaining this research.The investment in palliative and end-of-life cancer care research focused on children and adolescents and/or their caregivers represented 5% of the overall investment in palliative and end-of-life cancer care research over the three periods combined.A. Overall Investment9

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13. Compared with the overall distribution of the cancer research investment by funding sector, the federal government sector was over-represented in terms of the distribution of palliative and end-of-life cancer care research.Of the 45 organizations tracked in the CCRS, 33 had some investment in palliative and end-of-life cancer care research. The investments made by 12 organizations, however, accounted for 93% of the 17-year investment.The Canadian Institutes of Health Research (CIHR) had the highest level of funding each year, with a cumulative total of $51M.The Canadian Cancer Society (CCS), the next major funder, had a 17-year investment of $21M. B. Investment by Funding Organizations/ Programs13

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15. INVESTMENT BY FUNDER, 2005‒2021 ($M)15[1] For funder profiles on the investment in palliative and end-of-life cancer care research, please consult the interactive visualization at https://www.ccra-acrc.ca/tools/palliative-and-end-of-life-care-visualization/.

16. Operating grants represented 70% of the investment in palliative and end-of-life cancer care research over the 17-year period. Contrary to the diminished investment in operating grants after 2014, there was an increased investment in palliative and end-of-life cancer care research through career awards for years 2017 to 2019.Most (79%) of the 17-year investment was not focused on specific cancers, but applicable to all cancer patients at the end stages of life. The highest site-specific investments in the most recent five years (2017-2021) were for colorectal cancer ($1.2M), lung cancer ($0.8M), and leukemias ($0.4M).C. Investment by Funding Mechanism16

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18. The most pronounced change in the distribution of the investment over time was an increase in research focused on care delivery, access and quality, largely due to investments by CIHR.Investment by research type varied depending on the research focus and time period.In terms of physiological effects, research focused cachexia/anorexia/chemosensory disturbance (grouped into one) or pain had the highest investments regardless of time period.D. Investment by Research Focus & Type18

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22. There were 215 nominated Pis with one or more active award/grant focused on palliative and end-of-life care over the 17 years tracked. Of these, 40% (N=86) had active funding in 2017‒21 period and were working at institutions located in eight provinces.Although most trainees are supported from diverse sources like provincial or institutional programs, internships or operating grants, a small group of trainees receive awards through the grant peer-review process. There were 131 trainees received awards for research on palliative and end-of-life cancer care over the 17 years tracked. The investment in trainee awards (all levels combined) was at its lowest level in the 2017-2021 period.E. Nominated Principal Investigators22

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25. The brief report, Canada’s Research Investment in Palliative and End-of-Life Cancer Care, 2005–2021, is available at http://www.ccra-acrc.ca. Production of this report was made possible through collaboration and financial support from the Canadian Partnership Against Cancer Corporation and Health Canada. Many individuals have contributed to this report since its initial development. The Pan-Canadian Framework for Palliative and End-of-Life Care Research, published in 2017, is also available on our website. The framework identifies three broad research priorities: transforming models of care; patient and family centredness; and ensuring equity.Questions about this project, should be directed to the CCRA Program Manager at info@ccra-acrc.ca.Further Information25

26. www.ccra-acrc.ca@CCRAlliancelinkedin.com/company/canadian-cancer-research-alliance/info@ccra-acrc.ca