Last week, docblogger Bryan Vartabedian at 33 Charts raised two incredibly important questions about the future of patients as health care leaders:
- Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
- Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?
Almost immediately, ePatient Dave answered both questions wisely and succinctly:
- Fine with me if industry discloses those payments. Nothing to hide.
- Otoh, I think it’s nuts and counterproductive for consumers in any industry to disconnect.
But Dave and Dr. V only scratched the surface of the future of patient advocacy. As Dave notes, we are living in an era of disclosure (as doctors and advocacy groups are well aware) and there will only be more contact between engaged, public patients and industy. Dr. V’s first two questions were easy. The next two are not:
- If transparency is the standard, what are the disclosure responsibilities of patients, and
- If contact between patients and industry are inevitable, how do we destigmatize that contact?
One the first question, there are three possible answers.
The first is the FTC endorsement standard: The Federal Trade Commission, in part to crack down on bloggers who receive freebie products and then “review” them, is explicit that if a writer is receiving something of value from a company and then endorses the company’s products. This is the floor, and it looks like those in the health blogosphere are clearing that bar.
For health care professionals, there are even higher standards. New federal legislation will requires any gift of more an $100 to a doctor to be recorded and made public. Laws in some states are even tighter. If patients are held to that standard, that disclosure along similar lines would be required.
The final level of restrictions are those governing reporters. Those these rules aren’t legally binding, they are more stringent. The Society of Professional Journalists’ Code of Ethics is clear on this point: “Refuse gifts, favors, fees, free travel and special treatment, and shun secondary employment, political involvement, public office and service in community organizations if they compromise journalistic integrity.”
It’s not clear to me which of those options will achieve the best balance between open exchange and credibility, and as trick as that might be, I find the the second question even more vexing. Right now, industry interaction with patients is incredibly fruitful. I’ve written glowingly (as has my erstwhile collegue Allison Blass) about the Roche Diabetes Summit, and ePatient Dave has been explicit that the need for industry-patient collaboration is “extensive.”
Yet there has been constant blowback against groups that are involved with industry. Concern about physician conflicts is so great that the FDA has had trouble fully staffing its advisory committees. Concern about press contact with industry has undermined laudable education programs. It’s clear that, for many, there is no level of contact between life science companies and anyone else that is justifiable.
Such stringent attitudes towards conflicts would effectively seals off the innovators — biopharma companies — from patients, whose input and feedback is vital on everything from pricing to quality of life to safety. Dr. V and Dave have started an important discussion, and we owe it to the patients to ensure that this discussion doesn’t get unfairly cut short.