Patients and Pharma: Increasing Transparency, Decreasing Stigma

Posted by: in Healthcare Insights, Public Relations Practice on October 7, 2010

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:

  1. If transparency is the standard, what are the disclosure responsibilities of patients, and
  2. 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.

By: Brian Reid

Brian Reid is a director at WCG in the product group, where he specializes in media. He is a former journalist who believes content really is king.

Find me on: Twitter

2 comments

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  • http://www.wcgworld.com Brian Reid

    Cascadia —

    Great response. I don’t want to get into the weeds arguing about physician detailing, but I think we’re both on the same page with regard to interactions between industry and patients. Part of the rationale for my post was that we need to move carefully toward a future where no one feels exploited and where industry engagement isn’t assumed to be suspect.

    The questions you raise aren’t easy ones to answer, but ignoring them pretty much guarantees a disconnect between those who use medications and those that develop them.

    — Brian

  • http://blogger.alliance4health.org/ @cascadia

    Brain – great blog post (sorry my reply is a little long) – thank you for giving the links and sharing your insights. Much of the concern in the traditional patient advocacy community is the result of pharma’s long history of pharma in focusing on profits to the exclusion of everything else. For example the practice of detailing providers in an attempt to influence their prescribing patterns in ways that don’t always benefit patients.

    HISTORICAL REASON FOR LACK OF TRUST As documented in the New Hampshire Drug Detailing amicus brief – “There is an abundance of social science science evidence demonstrates that pharmaceutical companies use of prescriber identified prescription data gives them undue influence over presecribing practices that raise health care costs, promote irrational drug selection, threaten the professional integrity of the medical profession, compromises patient privacy and increases the prevalence of invasive marketing practices.”

    DETAILING PROVIDERS AND NOW SOCIAL INFLUENCERS
    Furthermore, “the most favored prescribers (who are rank ordered) can receive hundreds of thousands of dollars of payments from drug companies for speaking engagements, research and sitting on various advisory boards” Many of the more sophisticated and established advocacy organizations are aware of this and have policies n place to avoide any conflict of interest. We also know that individual patients and even blogger mommies are already being profiled and given trips and speaking fees so most advocates assume that this is an attempt to influence them versus learn from them, but this seems to be changing and genuine patient centered design principals are in play now.

    GIFTS INFLUENCE BEHAVIOR
    There is also a large body of evidence that “gifts of even negligible value” can influence behavior when targeted to so it is challenging for most advocates to know when to agree to have a trip paid for or to accept a speaking fee. Most large advocacy organizations like ARRP, Susan B Komen Foundation, American Cancer Institute, etc go out of their way to avoid this conflict of interest since they are self funded by their members and might explain why you rarely seen them at pharma sponsored events. Individual patients are extremely vulnerable to both being influenced and being accused of being influenced unless they have another source of funding.

    DIFFICULTY FOR PATIENT ADVOCATES TO FUND WORK
    I personally for example don’t work for health IT firms simply to keep my allegiance to consumers pure when serving on various advisory boards (I stood up the National eHealth Collaborative for ONC, I currently serve on an ONC funded Beacon Community advisory board, the regional REC – EHR selection committee, a quality committee and a patient safety one) but very few other consumer advocates are in a financial position to do so for long and it is difficult to balance the desire to get the word out with who has the money to bring them to a conference.

    NEW AREAS OF CONCERN
    Although I am often one of the very first to raise the alarm about conflict of interest (for example – should Pharma be delivering ads at the point of care on free EHR”S? how is that not a gift? how is that not meant to influence prescribing practices? do they also deliver generic drug ads? )

    POWERFUL EXAMPLE OF PHARMA WORKING WITH ADVOCATES
    The real reason however that I am such an ardent patient advocate is the result of working in the AIDS community in the late 80s right out of college, where it was the intense collaboration between very empowered people living with AIDS and pharma. The AIDS community was never content to merely receive the standard of care we changed it. We along with drug companies, researchers and govt transformed what was then a death sentence into what is now largely a manageable chronic condition here in the US.

    NEXT STEPS?
    Hopefully in the future there will be a new model of collaboration between pharma, patients, advocacy groups, providers and payers.

    Although I of course understand that pharma has a very successful business model and a vested interest in focusing on those drugs with the highest profit potential the disruptive transformation always comes from those areas with the least resources.What for example might happen if everyone realized that they could add real value to the community by providing patients and providers with the best information about treatments (ie it might be a generic) regardless of profit. Newer isn’t actually better but it would build up trust.

    DISRUPTIVE INNOVATION – FROM RESOURCE POOR ADVOCATES
    I would also suggest that patients with their limited resources are also often the real innovators but until we are able to ensure that everyone has access to the most basic of healthcare there might be less concern about new drugs then there is about designing a patient centered, high quality, effective, efficient system that ensures everyone can access the life saving drugs that already exist.