Patient Advocacy Support Groups’ Conflict of Interests

[notsdr]

Rick,

Thanks for the link to the Guardian and your comment about patient advocacy support groups’ need for financial support from Big Pharma which is essential for the advocacy groups to carry out their mission. However, the Guardian raises an important point – just as medical researchers are required to disclose their financial (and other) conflicts of interests in abstracts, interviews, and seminar presentations, shouldn’t a patient advocacy group have the same obligation when it recommends a drug or process, especially in the context of a government agency’s approval process? A patient reading a medical researcher’s publication is entitled to know whether there is a relationship between the researcher and the manufacturer of the drug which is the subject of the researcher’s testing. Similarly, a governmental organization responsible for approving a drug should know whether a patient advocacy group has a relationship with the drug manufacturer applicant when the advocacy group submits its recommendation of approval or disapproval of the pending application. The Guardian’s objection was not so much that patient advocacy groups take money from Big Pharma, but that “[O]ften, the financial interests were not clearly disclosed in Nice transparency documents.”

Transparency is the issue. As stated in the Federal Register Vol. 78, No. 27 / Friday, February 8, 2013, with respect to Rule promulgation for the Centers for Medicare & Medicaid Services 42 CFR Parts 402 and 403:

“payments from manufacturers to physicians and teaching hospitals can also introduce
conflicts of interest that may influence research, education, and clinical
decision-making in ways that compromise clinical integrity and patient care, and may lead to increased health care costs. We recognize that disclosure alone is
not sufficient to differentiate beneficial financial relationships from those that
create conflict of interests or are otherwise improper. Moreover, financial
ties alone do not signify an inappropriate relationship. However, transparency will shed light on the nature and extent of relationships, and will hopefully discourage the development of inappropriate relationships and help prevent the increased and potentially unnecessary health care costs that can arise from such conflicts.”

As you well know, the AMA also has a code of ethics which addresses physician research conflicts of interest.

Just as medical researchers should be transparent, patient advocacy groups should be too. I note that AnCan states which Big Pharma companies have financially contributed to it in the beginning of each video support session, and in its email communications to patients. This is the right thing to do and AnCan is commended for making these disclosures. Perhaps this is the time for U.S. based patient support groups to develop their own code of ethics to prevent a similar expose that was published by the Guardian in connection with the recent Nice drug approval proceedings. Yes, patient advocacy groups need and depend upon money from Big Pharma and the groups should accept the financial contributions, but the groups must also be transparent in disclosing the financial relationships. Carry on!

[Author]

Posts