Transparency is Good in Theory, But Not in Practice

I attended SMi's Social Media in the Pharmaceutical Industry conference this week and, as usual whenever I attend these conferences in the UK, I meet some very interesting people and get a new perspective on important issues that usually are not discussed in the U.S.

Take ethics, for example. I touched upon that topic in my presentation ("The Sorry State of Pharma Mobile Apps and What to Do About It"). But the presentation by Nick Broughton (@NickBroughton) was 100% devoted to "implementing social media ethics" in the pharmaceutical industry.

One of the principles Broughton espoused was "the first obligation is to act morally, not just compliantly." Pharma's first obligation, said Broughton, is to "act well. There's no defense if you make a mistake, especially in social media. When the rules are not clear -- and often they're not -- you have to rely on moral principles to make decisions that you can justify."

One of the moral principles discussed by several presenters at the conference was "transparency," which is very important for the industry these days. Everyone at the conference, I'm sure, would agree with EFPIA (the European Federation of Pharmaceutical Industries and Associations):  "The pharmaceutical industry recognises that it has a responsibility to show leadership in advancing responsible transparency."

The problem, I soon learned, is that transparency is good in theory, but not in practice when it comes to revealing payments to patient bloggers who "contribute" content to pharma-owned sites.

"Consumer Opinion Leaders" (COLs) are pharma's "secret sauce" for social media marketing. COLs have the benefit of already being part of the "conversation," which neatly solves the marketer's problem of how to "join the conversation." I imagine there are hundreds of patients out there on social networks who are paid thousands of dollars from pharmaceutical companies to be spokespeople or contributors to online branded drug or disease awareness campaigns.

This came up during a presentation at the conference by a German MS patient blogger/journalist who spoke of her contribution to "Living Like You," a Novartis Pharma AG website, Facebook page, and Twitter account driven by a "community" of patient bloggers. "Our team of bloggers are real people with MS, facing similar triumphs and challenges and finding unique ways to live fulfilling lives that can inspire a movement."

After the presentation I asked the presenter what I thought was a simple question: "I assume you are paid to contribute articles to Living Like You. Does Novartis reveal this on the site?"

That started a heated discussion and some people tried to rephrase my question as a criticism of patient bloggers receiving payment for their work. "Shouldn't bloggers get paid for contributing?" was the gist of the counter-argument which I viewed as a non-issue - there's nothing wrong with getting paid to deliver a service. But shouldn't the relationship between pharma and paid patient bloggers be revealed; i.e., transparent to readers?

The counter-argument to that was "It's obvious. Everyone knows these people must be paid." No, it's not. Readers could infer that a "team of contributors" means bloggers are contributing content not for monetary gain but for recognition or for purely altruistic reasons such as helping other patients.

The counter-arguers emphasized that there is nothing wrong with patient bloggers being paid by Novartis to "contribute" content to Living Like You and readers don't mind if they are paid - it would not bias them against the content. Then why all the heat about my suggestion that Novartis reveal this payment on the site?

Unfortunately, the response to my suggestion was not "pretty," which is funny considering that the presenter made a point about bloggers in her presentation that "not to accept a critical thought is not so pretty."

UPDATE (15 Feb 2016): I revisited the "Living Like You" site, which now acknowledges in a foot note that contributors are paid: "Living Like You bloggers are financially compensated at a reasonable market rate for their time. Payments to bloggers in no way influences their writing, opinions or perspectives on life with multiple sclerosis."

Should Pharma Hire Online "Patient Opinion Leaders"? Take my survey: http://tinyurl.com/2fr784u

The survey asks (among other things), do you agree or disagree with the following:

• Pharma companies should be free to hire knowledgeable patients to ENGAGE (carry on discussions) with patients within online PATIENT discussion forums that the company owns or sponsors 
• Every pharmaceutical company should have a "Patient Opinion Leader (POL) Transparency Policy" that details the nature of its financial dealings with patients who participate in online health forums.

After taking the survey, you will be able to see a summary of responses to date.

P.S. (24 Jan 2015) In a presentation by Alexandra Fulford, Strategy Consultant at ZS Associates, I learned than Janssen is offering patient advocacy groups a free "Social Media Toolkit for Patient Associations" to help them "articulate and voice their points of view."

Janssen's statement titled "Absolute transparency" in regard to the distribution of this toolkit is, IMHO, a good model to follow in disclosing ties to patient bloggers working on behalf of pharma. Here's what Janssen has to say about transparency:

Janssen is fully aware of the potential pitfall of conflict of interest posed by pharmaceutical companies and patient groups working together. That is why Janssen stipulates that such collaborations may only take place in absolute transparency, with contractual documents specifying the scope and modalities of the interaction. 

Each year, Janssen companies post on their websites a list of all patient groups receiving contributions and educational grant funding. Each entry includes a description of the project and its objectives. The company also encourages patient groups to post this information on their sites as well.