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The Voice of People With Breast Cancer

Education

Our Voices Blog

Shades of Grey - Patient Advocacy with Integrity

Increasingly the not-for-profit advocacy world has been clouded with criticism of industry funding. Many critics believe that any organization that receives funding from the pharmaceutical industry is automatically biased, but this ignores the great pains that health charities often go through to remain unbiased, ethical and credible. And it certainly does not reflect the patient-centric approach that CBCN takes.

So how does an organization like CBCN ensure that we are operating with integrity? Below, we outline the steps we take to confirm that the interests of patients are what really drives our work:

Putting patients first

Patients and their families are the foundation of CBCN and their needs inform all aspects of our organization, including our decision-making. Our unique, patient-directed board model ensures that patients are the ones leading the strategic direction of the whole organization, and keeps us committed to addressing the challenges of patients on the ground across the country.

CBCN also conducts numerous surveys, advisory councils, and in-person meetings with patients and caregivers to inform our informational, educational and advocacy activities. By directly engaging patients and their families in our work, we strive to accurately represent the genuine needs and concerns of individuals affected by breast cancer in Canada.

Being Transparent

CBCN is dedicated to transparency and voluntary disclosure regarding our funding sources. We have listed our annual reports and other performance information publicly on our website. We also disclose which projects are funded by industry, unless we are explicitly prohibited from doing so by Advertising Standards Canada (ASC) regulations. Advertising Standards Canada sets the criteria for acceptable advertising to Canadians.  For projects under ASC restrictions, we state that the project is funded by a leading pharmaceutical company. Being open about our industry collaboration allows us to foster open and honest dialogue with our network and preserve trust in our organization.

Focusing on compliance

CBCN accepts funding from a number of sources including private donations, corporate sponsorship and industry funding. We adhere to the Canadian Cancer Action Network (CCAN)’s Code of Conduct Governing Corporate Funding to ensure that our operations continue in the best interests of patients. As a registered health charity, we also strictly follow the Canadian Revenue Agency’s charity and tax laws.

Practicing an evidence-based approach

When making decisions about our projects and campaigns, CBCN bases our activities on the best and most credible scientific advice available. We do not promote initiatives that are not supported by sound medical and scientific merit. CBCN works closely with the medical and research community and with healthcare providers in particular to ensure that our projects are relevant to patients and independently scientifically vetted.

These are just some of the ways that CBCN aims to remain credible, ethical and transparent to our stakeholders.  While the conversations around industry funding for patient organizations are likely to grow in the future, it’s important to note that many patient groups are working hard to ensure that we are operating in an honest, ethical and credible way that serves the best interests of patients. It is a commitment we made early-on at CBCN, and one we remain dedicated to upholding throughout our organization.    


The views and experiences expressed through personal stories on Our Voices Blog are those of the authors and their lived experiences. They do not necessarily reflect the position of the Canadian Breast Cancer Network. The information provided has not been medically reviewed and is not intended to be a substitute for professional medical advice. Always seek the guidance of your healthcare team when considering your treatment plans and goals.

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