At the November, 2009, BDI Forum in New York City (“Healthcare Social Communications Leadership Forum Breakfast”), a question from the audience to a panel I was part of got to the core of the value of pharma to online patient communities. The question was “Should pharma be in discussion forums or lists frequented by patients? Do we need an industry consensus where we shouldn’t go?”

My colleague on the panel, Jonathan Richman (@jonmrich) noted that some consumer advocates speaking at the recent FDA public hearing said that under no circumstances should pharmaceutical companies be allowed to engage consumers in discussions on social networks. Jonathan thought that was too extreme. He suggested a few examples where such discussions could bring some value to the online patient community. He said there is data to suggest that patients/consumers would value the discussion if done the right way.

The problem is the TOTAL LACK OF PATIENT REPRESENTATION in this discussion! We’ve heard opinions of agencies and seen data from studies sponsored by agencies, but what are the views of real patients who have been using social media for years?

Gilles FrydmanWhereas other speakers at the BDI Forum used their complementary passes to invite colleagues from the industry, I used mine to invite the patient caregiver and advocate to the BDI discussion. That person is Gilles Frydman, founder of the Association of Online Cancer Resources (ACOR), a venerable and vibrant online community of cancer listservs that has helped more than 600,000 cancer sufferers and caregivers for over 13 years!

If you do not know what a listerv is, you cannot be blamed too much. Google doesn’t index discussions that occur on listervs, so how would you ever find out about them? But patients have found them. More importantly, patients and their caregivers have STARTED them!

In 1995, soon after Gilles’ wife, Monica, discovered that she had breast cancer, Gilles created ACOR and the world of Internet resources for cancer patients has never quite been the same since. ACOR’s 159 listservs deliver over 1.5 million email messages per week, none of which you can find on Google.

At the BDI Summit I waited patiently until the opportunity was right to introduce Gilles to the audience and give him a chance to speak. I suggested that we ask the ONE person in the audience who could really answer the question put to the panel: Gilles.

Here’s some of what Gilles said:

“I have been listening for close to an hour now about social media. The patient has NOT been present. It’s completely amazing! You’re still thinking broadcasting. Bring the patient voice to YOUR conversation and you will know what you are dealing with. If not, you will bring to the FDA a completely false idea of what’s going on. Five million people participate in health-related listservs. This far surpasses the 35,000 patients on sites like PatientsLikeMe in which maybe 9,000 are active.

“Social media is OLD! Eighteen years old at least!

“Industry should get together and find ways to ask these people how to best communicate with them. If you do this, within 6 months you will be able to put together a document for the FDA that will mean something.”

There are many people out there who CLAIM to speak for patients but who are actually running businesses that aggregate patients in order to serve them up to marketers. Gilles suggested that the industry BYPASS these middlemen and go directly to the patients who use social media.

To learn more about Gilles’ point of view, join me in a LIVE podcast interview today at 1:00 PM Eastern: “ACOR: An Online Social Networking Community of Cancer Patients & Caregivers Pharma Can’t Join But Can Learn From“.

Some questions we will discuss:

  • Tell us about ACOR, including why you created it?
  • What are listservs? Why haven’t you adopted some of the newer Web 2.0 tools?
  • How have ACOR patient communities interacted with pharmaceutical companies in the past and how do you see working with them in the future?
  • What can pharmaceutical researchers and marketers learn from ePatients? Anything?
  • What are some of you criticisms of the “new” social media fad?
  • What future plans to you have that nay be of interest to pharma marketers?