Handling Patient Communities


This post is part of a week-long series centered around the theme of communication. This week, well identify important communities and provide tips and guidelines on how to effectively reach them.

By Russ Ward (@russcward)

Patient communities are, to many pharma executives, terrifying. They’re the Wild West – an untamed land where people say whatever they want to whomever they want. There is no regulatory-committee-approved language.. There is no stipulation against off-label promotion. There is no official method of reporting adverse events. There is no fair balance. Patient communities are, in short, conversations. Real ones.

Moreover, as online-community expert Dan Shafer said way back in 1999: “Perhaps the biggest single misconception about virtual communities is that they can be created.” So not only can you not control them, but it doesn’t even work if you try to create your own “safe” one? What to do? Stay as far away as possible, is what many have decided. But that does a huge disservice to the communities and the companies both.
Consider another quote, this one the tagline of the e-Patients.net community: “Because health professionals can’t do it alone.” This is probably a startling quote for many people. Perhaps to a highly trained HCP, it smacks of hubris on the patient’s part. “Do they think they know better than I do?” Perhaps to a pharma executive, it is exhausting. “Now patients want all of the complicated information as well as the softer patient-education materials? How are we going to do that?” But perhaps what it should say is something different: “We’ve always done this, but now we’ve banded together.

There have always been involved patients: unwilling to passively accept their diagnoses and medications, they are the ones leading their care teams. They’re reading scientific journals; they’re comparing and contrasting different treatment options. The difference is that a patient community enables two things:

  • Sharing. A group dealing with the same condition can compare notes, share findings, argue the relative merits of different studies or regimens.
  • Encouragement. Patient are often discouraged, in small or large ways, from getting too proactive. Well-intentioned (and healthy) doctors and loved ones say things like “trust him”.

Historically, we’ve been more willing to trust our peers to provide insight and opinions that we will believe in, rather than listen to “experts”, but Edelman’s annual Trust Barometer survey found that while trust in companies, governments and “experts” is up, trust in peers has fallen. What does this mean for projects like the Society for Participatory Medicine, which runs e-Patients.net? Not much. Those are small percentage changes, and the movement is much bigger than that.

The best known of the e-Patients is ePatient Dave. In addition to his community participation, he’s got ablog and a prolific Twitter. His conversations give you a sense of the purpose of patient communities. They’re discussing billing errors, sharing interesting links, talking about news in their disease space. They’re commiserating, sharing jokes, talking about things utterly unrelated to their medical conditions. They are, in short, having a conversation. A real one. And they’re not going anywhere.

What should pharma do? Listen. Not try to orchestrate or create or pontificate. Just listen. See what matters to these patients, what they like, what they need, and what they’re thinking. Yes, report the adverse events. But mostly, just show a human face – one with two ears.




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