Last week at the Multi Channel Pharma Marketing Event, where I was interviewed by Pixels & Pills’ Sarah McLellan (“John Mack Goes Back to His PharmaGuy Roots!”), I heard a lot about “patient self-advocacy.” Lately, this term — aka, patient empowerment — has come to mean more than a desire by patients for more information and involvement in the health care process. It’s also being used to describe a few “Health Activists” like Allison Blass (Patient Blogger, Diabetes Activist, Lemonade Life) and Megan Oltman (Certified Migraine Coach, Patient Blogger, FreeMyBrain). Allison and Megan participated in a panel discussion entitled “Understanding the Needs of Today’s Empowered Consumer,” which was led by Jack Barrette, CEO, WEGO Health.

Barrette has been taking health activists — or “Consumer Opinion Leaders” (COLs) as he likes to call them — to pharma companies for private discussions similar to this panel discussion in which I participated. Allison seems particularly busy making the rounds among pharma companies and pharma conferences (see her review: “Health Activism“).

Jack, Allison, and Megan emphasized that online patients are looking for conversations with real people from pharma companies, not brands. This is a point I have often made (see, for example, “Markets as Conversations: Can You Have a Discussion with “Psoriasis 360” on Facebook?“). This desire was opposed to what physician panelists were requesting in a simultaneous panel being held behind the sound wall that separated the two camps. The physicians desired technology and apps to be supplied by pharma.

Allison told the audience about attending a “Diabetes Social Media Summit” sponsored by Roche in Orlando, Florida. Allison came away from that Summit feeling much closer to Roche and now has a more personal relationship with “Todd,” one of the Roche Summit organizers who was communicating with Allison before the event. “Oh my God,” said Allison at the Summit, “I’m finally getting to meet you!”

The physicians’ ears next door were probably burning with envy. They probably miss the good old days when pharma companies could invite THEM to outings at resort locations. But that’s now verboten by PhRMA! There are no PhRMA guidelines, however, about paying “patient self advocates” to attend “summits” at resort locations. Not that’s there’s anything wrong with that! I’m just wondering if “COLs” are the new “KOLs” (ie, physician Key Opinion Leaders) and where this will all lead. In fact, I know where it may all lead: to Senator Grassley, who may be writing letters to pharma CEOs requesting information about such “summits.”

Near the end of the patient panel discussion, Jack asked Allison and Megan to tell the audience what they want from pharmaceutical companies. “You need to pay some one’s full time salary,” said Allison referring to the desire of some pharma companies to interact with patients in online communities. “The only way to sustain growth and involvement in a [online] community,” said Allison, “is to have someone who actually does it [manage social media interactions with patients] as their job… to become the person who is known and loved by the community.”

I think Allison was talking about an online patient community set up and run by a pharmaceutical company as opposed to an independent online patient community that already exists. Pharma companies should just give bundles of money to the latter.

It makes perfect sense that pharma should have full-time employees managing their social media initiatives. However, it becomes problematic when pharma companies hire patient advocates to monitor other communities (see, for example, “Did J&J Troll Social Media Sites to Ensure Its Motrin “Recall” was a Secret?“) or to represent them in online communities.

The main issue is “transparency,” which may be a new concept for eager patient advocates who wish to be hired as pharma COLs. It’s a question I asked Allison when she mentioned receiving glucose meters and other goodies from pharma companies hoping she would endorse them. Allison is familiar with FTC guidelines regarding that issue, but I wondered how many other patient bloggers are.

Should Pharma Hire Online “Patient Opinion Leaders”? Take my survey: