Dear Patient, Come to the "Dark Side" & Engage with Pharma

Engaging patients was a major theme of the eyeforpharma Barcelona 2015 conference (hashtag e4pbarca), which just closed out after 3 days of presentations with a keynote presentation by Dr. Anne Beal, Chief Patient Officer, at Sanofi.

"Patients can help in many ways and we (pharma) have to reach out to them all," said Dr. Beal.

@TuLupus -- a Spanish Lupus patient blogger ("Tu Lupus Es Mi Lupus")-- was impressed and she offered this advice (as quoted by Paul Tunnah):

"patients, don't be afraid of going to the 'dark side' - engage with pharma and industry (is not so dark)."

"It's one of the most important things I've learnt in #e4pBarca," tweeted @TuLupus a few minutes later. "Dark side? No way! We need each other and you do great things."

Dark side? Let's imagine Pharma as Darth Vader and patients like @TuLupus as Luke Skywalker:

Darth Vader: Luke, you do not yet realize your importance. You have only begun to discover your power. Join me, and I will complete your training. With our combined strength, we can end this destructive conflict and bring order to the galaxy.

[Here Pharma -- as Darth Vader -- is telling Luke -- who represents all patients but especially "ePatients" like @TuLupus -- that patients are just beginning to discover their power and if they join with pharma their power will be much greater. The combined strength of patients and pharma will bring order to the healthcare system.]

Luke: I'll never join you!

[Obviously, Luke, like many patients, does not trust Darth Vader, i.e., pharma. This lack of trust was also hammered home by many presenters at #e4pbarca.]

It remains to be seen whether patients will join the "dark side" or, like Luke in Star Wars, reject Darth Vader's offer. The drug industry is hopeful it will be the former, not the latter that prevails and is doing everything it can to make that happen. Appointing "Chief Patient Officers" is just the first step to that end.

While reading the #e4pbarca chat stream, I noticed this tweet from Phillipe Kirby, Pharma Customer Engagement Ecosystem designer & developer @ Merck/MSD: "Anne Beal, CPO Sanofi: including patient perspective will [improve] patient outcomes."

I pointed out that in the past -- in a galaxy far far away -- "CPO" referred to "Chief Privacy Officer" and I wondered if there were any such officers left in the pharmaceutical industry. Kirby said that there was none in his company, only a Chief Compliance Officer who, I assume, handles privacy issues.

In the days when privacy was a big issue, pharmaceutical companies hired CPOs who were "customer centric" and took the side of consumers by creating policies to protect their privacy rights. Now, no one gives a s**t about privacy and all the CPOs are gone, replaced by compliance officers who are more concerned with legal/regulatory issues than with consumer rights. But, long live the NEW CPO: Chief Patient Officer. It will be interesting to see how long they last.

P.S. After writing this post, Frank Millheim (@millheif) -- a colleague of Kirby's at Merck/MSD -- tweeted a response to Kirby: "don't worry I won't tell the chief privacy officer that you said she doesn't exist." So obviously, the company does have a Chief Privacy Officer. But she must be very "private" indeed if the Customer Engagement Ecosystem developer didn't know about her. Just sayin'