Cancer patient Adam Hayden says patients should be compensated for their advocacy efforts. He writes:
Drug and device companies seek out e-patients to elicit informed perspectives from people who use their therapies. Patients are the end users, and they evaluate drugs and devices by their effects on quality of life, which is difficult to measure in laboratory settings or clinical trials.
Companies sometimes reimburse e-patients for allowing their profiles to be published in marketing efforts as a way to demonstrate real-world use, for speaking at industry conferences, or for taking part in focus groups. But these honoraria often fall short of industry standards because few patients receive training on either the true value of their perspectives or on how to set speaking and consulting fees. What’s more, this compensation often carries noncompete clauses and disclosure statements that preclude further opportunities for patients to be reimbursed for their time and experience.
That needs to change.
But can other patients trust the testimony of a patient who is on the payroll of a drug company? I don't think so. And for an excellent argument that such arrangements ultimately damage the credibility of patient advocates, have a look at Sharon Batt's new book, Health Advocacy Inc: How Pharmaceutical Funding Changed the Breast Cancer Movement.