Our data set represents the last complete reporting period under which charities were required to fully disclose public policy activities, including descriptions of the activities, resource deployment and amounts spent. The data clearly describe the degree of engagement and resource commitment charities gave to these activities. As such it serves as a vital benchmark as the sector moves into a post-pandemic era where strategic priorities for charities may dramatically change.
The Income Tax Act has recently changed the treatment of “political activities” by registered charities. It is now covered under the category of Public Policy Dialogue and Development Activities (PPDDA). This refers to all non-partisan activities a charity may do to influence laws, regulations, or government policies at any level, either in Canada or abroad. This would include opposing, changing, or rescinding old or new laws and policies; participating in process through written submissions or committee work; meeting with elected officials to advocate for change, and rallying the public for support of a specific issue. There remains the prohibition against charities engaging in partisan political activities—i.e. direct or indirect support of, or opposition to, any political party or candidate for public office.
Under the rules by which charities operated during the period covered in this report, charities were prohibited from spending more than 10% of their revenue on political activities and were required to report on their activities and disclose their spending. The new rules allow unlimited spending on PPDDA and no requirement to report expenditures or other details.
…representatives of patients do not always feel able to really influence decision-making processes.
Organizations that support patient-focused populations are commonly referred to as “advocacy” groups. Advocacy is a term broadly applied in the context of the charitable mission of these groups. While the implication is that these groups are actively lobbying government to advance the interests of those they serve, there is another form of advocacy attached to the charitable mission of disease awareness and education. This manifests itself in activities such as programs directed at health care professionals, public awareness campaigns, and building the capacity of individual patients to advocate for their own care throughout the patient journey. While we recognize this broader context, this analysis is restricted to the consideration of public policy activities, or PPDDA.
Research indicates a complicated state of affairs in the matter of public policy “when participation takes place through patient organizations: representatives of patient organizations may also be manipulated, and representatives of patients do not always feel able to really influence decision-making processes”.[16] Indeed there has been discussion that patient organizations should professionalize and discard the veneer of volunteerism in order to increase their level of participation beyond what can often be considered as tokenism. There is further evidence that impact of patient organization participation in health policy decision-making can be quite low as is the case in Italy and France.[17]
According to the European Patients Forum (EPF) there is no agreement on best practices for patient involvement in Health Technology Assessment (HTA).
Adding to the challenges that patient organizations face, there are no clear standards for equitable participation in policy decisions. For example, according to the European Patients Forum (EPF) there is no agreement on best practices for patient involvement in Health Technology Assessment (HTA) and there are severe limitations to the practice of engagement. At the international level, the Health Technology Assessment International (HTAi) Patient and Citizens’ Sub-Group is working to promote methodologies to incorporate patients’ perspectives in HTA, but there is as yet no clear consensus in this policy area among HTA organizations leaving patient organizations still waiting to be invited to the table.[18]
There is limited information available about the impact of Canadian patient organizations on policy development. It has been demonstrated that patient involvement in policy areas such as HTA can have beneficial results and uncover insights into patient experience previously undisclosed.[19] It is for this reason that organizations such as Health Quality Ontario embedded patient feedback into their HTA process. But there is no significant evidence reporting the impact and influence of patient organizations across the policy landscape.
There is no significant evidence reporting the impact and influence of patient organizations across the policy landscape…
To address this important gap, we examined the public returns of the patient-focused organizations to identify how they describe their activities and what financial and human resources they devote to public policy activities.
Definition of public policy dialogue and development activities (PPDDA)
The CRA describes PPDDAs as “activities a charity carries on to participate in the public policy development process, or facilitate the public’s participation in that process”, while “public policy means the laws, policies, or decisions of a government, in Canada or a foreign country.”[20]
Total expenditures on public policy activities
Out of the total of 1004 charities, only 31, or 3%, reported PPDDA expenditures. Total expenditures by this small number of organizations was $5,135,878, representing 0.38% of total revenue of $1.366 billion for the entire patient-focused sector. Under rules operational at the time, this amount leaves 96.5% unspent out of the eligible $146 million that the patient-focused health charities could have collectively spent under the old rules.
96.5% unspent out of the eligible $146 million.
Table 22: Public Policy Highlights
| ORGANIZATIONS REPORTING | 31 |
| % OF ALL ORGANIZATIONS (1004) | 3.1% |
| TOTAL EXPENDITURES | $5,135,878 |
| POLICY DOMINATED BY 2 ORGANIZATIONS | 50% OF ALL EXPENSES |
| CANADIAN CANCER SOCIETY | $1,728,220 |
| CANADIAN DIABETES ASSOCIATION | $801,686 |
There are a number of possible reasons why there is so much money left on the table when it comes to public policy activities. Clearly, the size of the organization and its ability to devote resources, including financial and human resources, is a key determinant. As we also see in the following section detailing the description of activities, there appears to be limited number of issues that actually resonate with the mandates of these organization. It would seem to indicate that even with some disease states represented by multiple organizations, the siloed nature of these groups appears to restrict collective action on issues that cross patient-focused boundaries.
One exception to this is the Health Charities Coalition of Canada founded in 2000 with the mandate to “advocate for sound public policy on health issues and promoting the highest quality health research.” The largest of the patient-focused health charities in Canada belong to this coalition. Among the resources offered by the Coalition is the Canadian Consensus Framework for Ethical Collaboration, outlining a set of ethical standards to guide collaboration among patient organizations, health care professionals and the pharmaceutical industry.
While new rules were enacted in early 2019 allowing charities to spend up to 100% of their revenue on PPDDA, charities have not yet had time to develop new programs and PPDDA campaigns. PPDDA must be in support of the charitable purposes of the organization and there is still some confusion on the interpretation of this limitation in that political activity as a sole focus is not a charitable purpose but a political purpose.[21]
Interestingly, the lack of impact implied by the relatively minimal expenditure by this sector is amplified with the disclosure that of the $5.135 million spent, fully 50% of that is accounted for by only 2 of the charities – Canadian Cancer Society and Canadian Diabetes Association (now Diabetes Canada).
Table 23: Total expenditures on public policy activities reported by organization
| Organization | Amount | Total Revenue | % of Total Revenue |
|---|---|---|---|
| Canadian Cancer Society | $1,728,226 | $187,804,352 | 0.92% |
| Canadian Diabetes Association | $801,686 | $36,351,844 | 2.21% |
| Parkinson Canada Inc. | $344,181 | $10,400,951 | 3.31% |
| Amyotrophic Lateral Sclerosis Society of Canada | $326,196 | $7,960,369 | 4.10% |
| Juvenile Diabetes Research Foundation Canada | $318,674 | $20,823,730 | 1.53% |
| Heart And Stroke Foundation of Canada | $279,000 | $169,462,000 | 0.16% |
| Alzheimer Society of Canada | $192,103 | $19,522,888 | 0.98% |
| Rethink Breast Cancer Canada | $149,285 | $2,110,426 | 7.07% |
| The Arthritis Society | $148,327 | $26,459,140 | 0.56% |
| Cystic Fibrosis Canada | $147,656 | $18,881,000 | 0.78% |
| Ovarian Cancer Canada | $139,772 | $3,806,035 | 3.67% |
| Childhood Obesity Foundation (COF) | $86,207 | $2,837,407 | 3.04% |
| Société Canadienne de la Sclérose en Plaques (Division du Québec) | $73,154 | $5,585,101 | 1.31% |
| Huntington Society 0f Canada | $60,351 | $4,286,307 | 1.41% |
| Ottawa Regional Cancer Foundation | $59,307 | $4,435,335 | 1.34% |
| Canadian Cancer Survivor Network | $51,423 | $518,139 | 9.92% |
| Allergies Québec / Allergy Québec | $43,058 | $952,184 | 4.52% |
| Alberta Lung Association | $36,855 | $2,073,279 | 1.78% |
| Prostate Cancer Canada | $34,052 | $12,428,912 | 0.27% |
| Ontario Lung Association | $33,478 | $9,302,005 | 0.36% |
| Crohn’s and Colitis Canada | $31,131 | $14,704,213 | 0.21% |
| Alzheimer Society of B.C. | $17,019 | $9,728,822 | 0.17% |
| The Lung Association of Saskatchewan Inc. | $9,463 | $2,525,736 | 0.37% |
| Autism Society Ontario | $6,163 | $9,718,412 | 0.06% |
| Asthma Canada / Asthme Canada | $5,428 | $773,555 | 0.70% |
| New Brunswick Lung Association Inc. | $3,866 | $728,058 | 0.53% |
| Diabétiques de Lanaudière Inc. | $2,873 | $144,155 | 1.99% |
| Pulmonary Hypertension Association of Canada | $2,444 | $566,749 | 0.43% |
| Association des Personnes Handicapees Visuelles du Bas St-Laurent | $2,000 | $161,906 | 1.24% |
| Alzheimer Society of Manitoba Inc. | $1,500 | $2,505,404 | 0.06% |
| Parkinson Québec | $1,000 | $1,717,687 | 0.06% |
Description of public policy activities
While 31 organizations disclosed expenditures related to public policy activities, there are 35 groups that provided descriptions of public policy activities. The discrepancy in disclosure can be attributed to the type of activity carried out and what resources if any – e.g. volunteers, social media – were deployed.
Seven key themes emerge from these descriptions:
- Access to Care. Fifteen organizations included access to high quality care as a key anchor of their activities. This includes access to specific medical equipment such as sleep apnea equipment and non-invasive ventilation and also more comprehensive care such as palliative and hospice access.
- Access to new drug and device therapies. Twelve groups noted that they had participated as contributors of patient input to Canadian processes for assessing new drugs and devices such as Common Drug Review (CDR) applications, Pan Canadian Pharmaceutical Alliance (pCPA) policy review, Health Technology Assessment (HTA) for new devices and drugs, as well as advocating for including new drugs in provincial formularies.
- Public Health and Quality of Life. Improving Quality of Life for their constituency forms a core part of the mission of 10 groups. There is an implicit relationship for some between their members’ needs and the public health responsibility of government. This is illustrated by objectives to, for example, educate and inform about food allergies, provide adapted accommodation for those with disabilities, remove the stigma associated with genetic testing and support a cancer care coaching pilot.
- Burden of Illness. This is an explicitly powerful component of activity for 9 groups. It manifests itself in educational and awareness programs, lobby day action on Parliament Hill, and informing members of parliament about the physical, emotional, social and financial cost that illness places on patients.
- Policy and Legislation. There was mention of advocacy activities around specific policies or legislation by 9 groups. This included a tax on sugary drinks, changes to the Disability Tax Credit, accessibility, smoke free environments and Bill 222 amendments to the Human Rights Code regarding genetic characteristics.
- Funding research. Eight groups indicated that advocating for increased funding for scientific research for their disease was vital to their work, and it would appear, part of the commitment they make to their members. It is tied to the theme of a “hope for a cure” that forms the basis of a relationship with members for many organizations.
- Caregiver support. While only 4 groups highlighted this need, it is significant that this issue has risen to the level of political activity. Over the last few years there has been increased activity at various levels of government on the topic of caregiver support. For example, the non-profit Ontario Caregiver Organization has been created in Ontario and think tanks like the Change Foundation have made caregiver support a key focus of their work.
There is minimal mention of pan-Canadian activity with only a couple of organizations devoting resources to coast-to-coast activities. Work by the Alzheimer Society to advocate for a national dementia strategy is one example.
There are also a few examples of collaborations between groups to advance specific common issues. Heart and Stroke and Childhood Obesity Foundation have partnered in Stop Marketing for Kids (Stop M2K!) Coalition. In Quebec there is a coalition of progressive neurological and neuromuscular groups called Neuro Partners. Finally, an example of a cross-sectoral collaboration by Asthma Canada in the Clean Economy Alliance demonstrates that common policy interests aren’t necessarily restricted to patient-focused policies. It represents an understanding and awareness that the health outcomes of patients are affected by many factors including environmental and social determinants of health.
A full description of the public policy activities undertaken by those patient-focused groups who reported them is detailed in Appendix A.
Resources and methods used for public policy activities
Charities are required to identify what tactics and tools they used to participate in or carry out public policy activities. Table 24 identifies each one of the methods used with the number of groups reporting their deployment and the percentage of the groups who disclosed from 35 groups that reported.
Table 24 highlights the top 3 methods used by organizations: the Internet, letter writing campaigns, and conferences. The Internet is the most popular tool listed for supporting these activities. While able to reach large numbers of people, and especially a younger demographic, the use of social media for these purposes has often been referred to as “passive activism” or “slacktivism” due to the low level of commitment required of the target audience to engage with the cause. Conventional letter writing campaigns continue to be deployed, generally due to the perceived ability to physically flood the mailbox of a member of parliament in order to draw attention to a cause. There is still considerable use of conferences and seminars to inform and educate. These methods align well with some of the themes that emerged in the previous section that described the public policy activities of organizations.
Table 24: Human and Financial Resources used for public policy activities
| Line | Description | Staff # | Staff % | Volunteers # | Volunteers % | Financial # | Financial % | Property # | Property % |
|---|---|---|---|---|---|---|---|---|---|
| 700 | Media releases and advertisements | 11 | 28.21% | 9 | 23.08% | 19 | 48.72% | 0 | 0.00% |
| 701 | Conferences, workshops, speeches, or lectures | 15 | 38.46% | 12 | 30.77% | 22 | 56.41% | 2 | 5.13% |
| 702 | Publications (printed or electronic) | 11 | 28.21% | 10 | 25.64% | 17 | 43.59% | 0 | 0.00% |
| 703 | Rallies, demonstrations, or public meetings | 5 | 12.82% | 4 | 10.26% | 8 | 20.51% | 0 | 0.00% |
| 704 | Petitions, boycotts (calls to action) | 4 | 10.26% | 2 | 5.13% | 6 | 15.38% | 0 | 0.00% |
| 705 | Letter writing campaign (printed or electronic) | 16 | 41.03% | 10 | 25.64% | 17 | 43.59% | 0 | 0.00% |
| 706 | Internet (website, social media (Twitter, YouTube)) | 17 | 43.59% | 11 | 28.21% | 24 | 61.54% | 0 | 0.00% |
| 707 | Gifts to qualified donees for political activities | 1 | 2.56% | 1 | 2.56% | 0 | 0.00% | 0 | 0.00% |
| 708 | Other (specify): | 5 | 12.82% | 3 | 7.69% | 8 | 20.51% | 0 | 0.00% |
Non-profit groups without charitable status
Registered charities are not the only patient-focused organizations dedicated to supporting patients with specific conditions. There are numerous groups incorporated as non-profit organizations that resemble the registered charities and have similar missions. But there are differences.
While non-profit groups can accept donations and grants, they are not able to issue tax receipts. Unlike charities, non-profits are not required to file annual information returns that will be posted publicly. Additionally, they have not had the same restrictions inhibiting their range of public policy activities that registered charities did. While these charitable restrictions were revised in early 2019, the new regulations are too recent to have generated much change in the way that charities conduct these activities. The full description of the differences between registered charities and non-profits is detailed in Appendix D.
A limitation of the report is the lack of publicly available financial data for the non-profit patient-focused organizations that do not have charitable status. We have identified 46 of these groups (full list in Appendix C) from public sources such as member lists of national and provincial health advocacy coalitions as well as participants in public hearings and consultations. This list is not exhaustive. From a review of websites, publications and events, they have been deemed to qualify as meeting the criteria for patient-focused organizations.
A predominant characteristic of these groups is that they are volunteer driven with only a select few having full-time employees, to the best of our determination. There can be a number of reasons these groups have chosen a non-profit structure over a charitable one with cost of becoming a registered charity, the ongoing regulatory burden, and the absence of restrictions on public policy advocacy being three of them.
It is understood how vulnerable and fragile many of these non-profit groups are and how dependent they are on a limited base of support.
At the same time, it is understood how vulnerable and fragile many of these non-profit groups are and how dependent they are on a limited base of support, a small cadre of committed volunteers, a lack of donor incentive from a tax receipted donation, and the need to focus on narrow issues in order to be impactful.
Despite lacking charitable status, these non-profit organizations compete with patient-focused and other health charities for public attention and often delegate significant attention and resources to public policy advocacy. For these reasons the interface between patient-focused charities and non-profit organizations merits attention within this chapter – Public Policy Activity – of this report.
How patient-focused charities and non-profit organizations working with patient, families and caregivers approach certain advocacy or public policy issues differently may be seen in the emphasis each category – non-profit or charity – places on engaging with the process of funding new drugs in Canada.
Many patient groups, whether charities or non-profits, include the issue of access to medication as a key part of their mission as pointed out earlier in the section Description of Public Policy Activities. Once a new drug is approved by Health Canada as safe and marketable in Canada, the next step in the journey takes it to the CADTH Common Drug Review (CDR) where it is assessed and recommendations provided to public drug plans, except Quebec, on the value of providing coverage for the product. The CDR process invites input from patients and patient groups when new applications are received from manufacturers. These submissions by patient groups are meant to provide the CDR expert committees with a deeper appreciation of the lived experience of patients.
Out of 107 publicly named patient input contributors to CADTH CDR and pCODR April 2013 – Oct 2017, 62 of the patient-focused charities contributed to CADTH during that time period (Table 26). This represents just 6% of all patient-focused charities.
In contrast, 44% (20) of the 46 non-profit organizations identified in Appendix C appear among the 107 publicly named patient input contributors to CADTH (Table 25). Comparing the two types of organizations with this limited data, non-profit groups appear to contribute to the task of patient input to CDR at a rate of participation almost 7 times higher than the larger cohort of patient-focused charities. Without data to concretely support this disparity, it is difficult to conclude why this imbalance between organization types exists.
Table 25: Non-profit groups contributing to CDR and pCODR
- Action Hepatitis Canada
- Arthritis Consumer Experts
- Bladder Health BC
- Canadian Arthritis Patient Alliance
- Canadian Association of Psoriasis Patients (CAPP)
- Canadian Pituitary Tumours & Related Diseases Network (PTN)
- Canadian PKU & Allied Disorders Inc.
- Canadian Psoriasis Network
- Canadian Skin Patient Alliance
- Canadian Spondylitis Association
- Canadian Treatment Action Council
- Canadian Women with Fibroids
- Centre for ADHD Awareness Canada (CADDAC)
- Chronic Myelogenous Leukemia Society of Canada
- Consumer Advocare Network
- COPD Canada
- Familial Hypercholesterolemia Patient Network
- HAE Canada Inc.
- International Federation of Aging
- Pacific Hepatitis C Network
Table 26: Registered charities that contributed to CDR and pCODR 2013-3017
- AboutFace Craniofacial Family Society
- Arthritis Society
- Asthma Society of Canada
- BC Epilepsy Society
- British Columbia Lung Association
- Canadian Breast Cancer Network
- Canadian Cancer Survivor Network
- Canadian Continence Foundation
- Canadian Council of the Blind
- Canadian Diabetes Association
- Canadian Liver Foundation
- Canadian National Institute for the Blind
- Canadian Organization for Rare Disorders (CORD)
- Canadian PBC Society
- Canadian Pulmonary Fibrosis Foundation (CPFF)
- Canadian Society for Mucopolysaccharide and Related Diseases
- Cardiac Health Foundation of Canada
- Centre d’Aide aux Personnes Atteintes d’Hépatite C (CAPAHC)
- Colorectal Cancer Association of Canada
- Craig’s Cause Pancreatic Cancer Society
- Crohn’s and Colitis Foundation of Canada
- Cystic Fibrosis Canada
- Diabetes Canada
- Dravet.ca
- Dystonia Medical Research Foundation of Canada
- Epilepsy Newfoundland and Labrador
- Epilepsy Nova Scotia
- Epilepsy Ontario
- Epilepsy Toronto
- Foundation Fighting Blindness (FFB)
- Gastrointestinal (GI) Society
- Heart and Stroke Foundation of Canada
- HeartLife Foundation
- Hepatitis C Education and Prevention Society (HepCBC)
- Isaac Foundation for MPS Treatment and Research
- Kidney Cancer Canada
- Kidney Foundation
- Leukemia & Lymphoma Society of Canada (The)
- Lung Association of Saskatchewan
- Lung Association, Alberta & NWT (TLA)
- Lung Cancer Canada
- Lymphoma Canada
- Melanoma Network of Canada
- Multiple Sclerosis Society of Canada
- Myeloma Canada
- National Gaucher Foundation of Canada
- New Brunswick Lung Association
- Ontario Lung Association
- Osteoporosis Canada
- Ovarian Cancer Canada
- Parkinson Society of Canada
- Polycystic Kidney Disease (PKD) Foundation of Canada
- Prostate Cancer Canada
- Pulmonary Hypertension Association of Canada
- Rethink Breast Cancer
- Sarcoma Cancer Foundation of Canada
- Save Your Skin Foundation
- Scleroderma Society of Canada
- Soft Bones Canada
- Thalassemia Foundation of Canada
- Thyroid Cancer Canada
- Tuberous Sclerosis Canada Sclerose Tubereuse
Total: 62