Dr. Joel Lexchin is Professor Emeritus in the School of Health Policy and Management, Faculty of Health, York University. Dr. Lexchin’s 2025 article, ‘Information About Canadian Patient Groups’ Conflicts of Interest and Industry Funding- Incomplete, Inconsistent, and Unreliable: A Cross-Sectional Study‘ is an expose on the conflicts of interest that exist between patient groups Industry (e.g. pharmaceutical companies).
For Mad in Canada, Dr. Lexchin wrote the following:
Patient groups play an important role in health care. At the same time, the majority receive payments from pharmaceutical companies which calls into question whether they speak for the best interests of their membership or the companies that fund them. Canada lacks any mandatory reporting by either patient groups or pharmaceutical companies regarding payments between the two.
There are three potential sources of information about payments: 1) declarations made by groups when they file submissions to the Canadian Agency for Drugs and Technologies in Health (CADTH, now Canada’s Drug Agency), an organization created and funded by Canada’s federal, provincial and territorial governments, to provide recommendations about whether governments should provide public funding for the new drug; 2) patient groups’ websites; and 3) voluntary disclosures by pharmaceutical companies.
My study investigates the data available in all three sources and finds that they are incomplete and inconsistent, making any conclusions about patient groups’ conflict-of-interest and funding unreliable. Companies declare funding from one set of companies when they make submissions to CADTH but show sponsorship from an almost completely different set of companies on their websites. Information on the websites of drug companies about donations to patient groups is more accurate in terms of the amount of money donated but only a handful of the 45 member companies of Innovative Medicines Canada provide such information.
There are three dimensions associated with transparency of information: availability of information, accuracy of information and clarity of information. Together the three indicators form the fundamental bases for informed, evidence-based decision-making. Transparency about payments that patient groups in Canada receive is lacking in all three dimensions.
The lack of transparency about patient groups’ COI and the amount of money that they received as a result of their relationships with pharmaceutical companies means that when groups take positions on controversial issues it is difficult to know if they are speaking on behalf of their membership or if their statements might be influenced by their financial relationships with the companies that support them. This lack of certainty threatens the credibility of patient groups.
The Canadian Organization for Rare Disorders (CORD) has publicly criticized the legislation that potentially creates the first steps to a universal, first-dollar coverage pharmacare plan. Further, in 2018 its CEO told the Globe and Mail that since she does not know what the right price for a drug should be, she does not believe that she should be advocating for drug companies to either raise or lower their prices.
Although increased transparency is no guarantee of independence, it is an important and necessary first necessary step. However, relying on voluntary disclosure is not sufficient. Legislation, such as the bill passed in the province of Ontario in 2018, but never implemented, mandating disclosure of company payments is necessary.