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Transparency among patient influencers is a must

A post on today’s Health Affairs blog by Judy Butler and Adriane Fugh-Berman presses the case for transparency among patient influencers who work with pharmaceutical companies. The authors cite WEGO Health’s work with patient influencers and the industry, and suggest “these kinds of relationships have the potential to blur the lines between patients’ intentions and those of the people paying to amplify their voices.”

Our commitment to transparency is set in stone. It’s a commitment shared by every patient leader we work with. As our CEO, Jack Barrette, points out in his response to the post, this is not just as a matter of policy, but of principle.

If you don’t think we’re getting it right, talk to us. Let’s fix it together.

Here’s Jack’s response to the Health Affairs post in its entirety.

WEGO Health has been working with opinion leaders, advocates and influencers in the patient community for more than 12 years. I started this company with a mission to empower patients to help others and themselves, to accelerate positive change in health and healthcare, and to engage the power of patients to improve health for all.

Compensating patient leaders has from day one been an integral part of that mission. Like other experts in healthcare, I believe patient leaders bring real business value to the industry. They deserve to be compensated accordingly, not just for their time, but for their expertise. I am more than proud that our company has helped build a movement to replace “actor portrayals” with real patients. And I’m gratified that we’ve earned the respect of our members and the industry for our efforts to ensure that patients are fairly compensated and reimbursed, reversing decades of expectation that they should volunteer their time and money out of “passion for their cause.”

That said, I am not cavalier about the ethical issues raised in this piece. Precisely because this is “murky territory,” we place a premium on transparency and consumer trust. Our e-learning platform was built to ensure that patient leaders are always learning more about how to engage with their communities responsibly, authentically and ethically.

And it must be made clear that our patient leaders take trust very, very seriously on their own. The ethical bond they have with their peers and their communities is unshakable. One of our patient leaders, Erin Smith, put it this way: “I would rather be honest with my readers and share both the good and the bad than to be swayed by compensation. I am upfront with brands and tell them I will write my honest opinion as well as disclose any payment or free products.”

Today, as a matter of principal and of policy, any patient influencer we work with is required to disclose that they are being compensated by a sponsor. This disclosure is made where it matters most – at the point of contact between an influencer and other patients on social media. Every paid campaign we run contains a clear “sponsored by” disclosure that includes the name of the sponsoring company. This requirement is not only to exceed FTC guidelines, it is a reflection of our commitment to transparency and consumer trust.

We’re not perfect. We welcome scrutiny to ensure that we and the patient leaders we work with are adhering to best practices. If, for example, our confidentiality terms appear to prevent appropriate disclosure, we are open to hearing how you and other experts would recommend we modify them. When patient leaders use dozens of very different social media channels, what does best-practice disclosure look like? These are questions we are deeply interested in discussing — and addressing.

Let’s talk.

Jack Barrette
CEO, WEGO Health

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