Information About Canadian Patient Groups' Conflicts of Interest and Industry Funding-Incomplete, Inconsistent, and Unreliable: A Cross-Sectional Study

Patient groups play an important role in health care. At the same time, the majority of Canadian groups 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 groups and companies. There are three potential sources of information on the topic of payments: (a) declarations made by groups when they file submissions to the Canadian Agency for Drugs and Technologies in Health, an organization created and funded by Canada's federal, provincial and territorial governments, about whether the agency should recommend public funding for the new drug; (b) patient groups' websites; and (c) voluntary disclosures by pharmaceutical companies on their websites. This study investigates the data available in all three sources and finds that they are incomplete and inconsistent, making any conclusions about patient groups' conflicts of interest and funding unreliable. Although increased transparency is no guarantee of independence, it is an important and necessary first step. However, relying on voluntary disclosure is not sufficient. Legislation, such as the bill passed in the province of Ontario but never implemented, mandating disclosure by companies of payments that they have made is necessary.