Patients as Brand, Advocates

I love earPlanes.

Do you know what I am talking about?  earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying.  The device consists of a silicone earplug and a ceramic pressure regulator.  As a frequent flyer, I use them on every flight. They cost $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days.  This was quite a problem.  It is hard to speak well if you cannot hear well.  Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes.  I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option.  (By that point I already spent over 500 dollars on my air flight-induced ear infections.)  Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about Earplanes is not to help Cirrus Healthcare Products.  I want to help my friends and fellow travelers.  You might also realize there were two brands enclosed in the above testiomony: Earplanes/Cirrus Healthcare Products and Regina Holliday.

This post on the meaning of branding was inspired by a cold call request made by Andrew  from PM360 Magazine.

“I am with PM360 Magazine, a monthly publication for pharma marketers. We also send out a monthly e-newsletter called Panorama. Every month in the newsletter we ask our readers a questions about a new topic, and then we publish the responses we receive in an article in the next month's edition. I thought that this topic might interest you as a patient advocate.

Trend Talk: Patients as Brand Advocates?

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there? Email your responses… by May 14.

For the most part, we are only looking for a few sentences from each contributor. I thought you may want to contribute something from the patient's point of view. Let me know if you have anything to say on this topic and are interested in responding.

Thanks,

Andrew”

This request bothered me in its tone and scope, so I thought I would respond online and invite all my patient advocate friends to respond as well…

Do social media much?  The tone of this request is very off if you follow the ins and outs of social media.  Klout and PeerIndex were launched almost 4 years ago and that is rather ancient on the internet.  Also, I have never seen anyone in my social network utilize Klout  “perks:” the commercial tie-ins to brands.  I checked out PM360’s internet presence and it is a little sparse for a marketing magazine.  They have 134 connections on LinkedIn, 65 page likes on Facebook and on Twitter they have 1,553 followers.  I think some of the questionable tone of this request is due to inexperience in Social Media and too much exposure to the traditional group-think in marketing.

“While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar?”

A word of advice: Don’t ever ask a patient activist how you can take advantage in the realm of patients…

“What is the best way that pharma marketers can work with patients to improve their campaigns?”

 Most patients in the social media space were just regular people who began to speak out.  In many cases they did that out of pain.  Just as a cattle’s brand is seared upon his flesh, the patient’s brand is seared upon their soul.  The patient may brand themselves with their formal name: Regina Holliday, a modification of said name: e-PatientDave, a created name: Afternoon Napper or the name of the organization they have created: Colontown.  They complete this painful process to spread their message be it focused on patient data access, patient empowerment or disease specific research and funding.

So the primary brand in such discussions is the brand of self and those in marketing are interested in tagging along for the ride.  Well, before you join my crazy life ride; I need to know something about you.  I may sing the praises of earPlanes without ever meeting anyone from Cirrus Healthcare (10 followers on Twitter) based on satisfaction of the product.  But I bet I would be even more appreciative if I was able to engage in active discussion with Cirrus staff who shared on Twitter.  We like to thank folks personally for the good work they have done.  When we work on campaigns in social media we expect the support to be like a friendship: it goes both ways.

“What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?”

If you want to see a good example of pharma social media look at Lilly Clinical Open Innovation or @Lilly_COI on twitter.  They talk with us.  They attend our tweetchats. They even wished me Happy Birthday through a retweet last week.  @Lilly_COI may not have a ton of followers, but they understand social media is not about using patients.  Social media is about working with people. 

The folks @Lilly_COI have done a great job at helping patients get the patient message out.  They attended and helped sponsor The Partnership With Patients Summit in Kansas City last fall and even hosted an unconference session on clinical trials and patient experience.  They actively retweeted what patients had to say and helped the conference hashtag trend on Twitter.   That is what you meant by “to help get their message out there?” Correct, Andrew?  You wanted to know how pharma could help get the patient's message out? 

Well, those are my thoughts, but I would love for folks to respond to Andrew in the comments section of this blog or on the PM360 twitter account. 

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Update: Andrew wrote this response piece: Learning a Lesson from Patient Advocates

Thank you Andrew for joining the conversation!

The Victim of the Game

The Victim of the Game

When I was a senior in high school a very important album was released.  It was called No Fences and was performed by Garth Brooks.  It was chocked full of songs that are now considered country classics.  One of the most powerful songs on that album was entitled “Victim of the Game.”  It struck quite a chord with me and other young girls.  This song was so easy to identify with, as many of us were suffering the heartbreak of first loves and dating.  We were realizing that for many people love was just a game.  Here is the first stanza:

“Well, it took a little time

But I guess you finally learned

That promises get broken

And bridges do get burned

You've been siftin' through the ashes

Just tryin' to find a flame

Holdin' on to nothin'

You're a victim of the game.”

Recently, I found myself thinking once again of that song from so many years ago.

I began thinking about it as I began to design The Walking Gallery Jacket of Kathi Apostolidis: “The Victim of the Game.”

If you follow e-patient comments on Twitter, Facebook or e-patients.net you probably know Kathi.  I have been following her since June of 2010.  She is very active on social media, showing up throughout my day.  Which is quite a feat as Kathi tweets from Greece.  Her astute comments are always a strong addition to whichever discussion is at hand.  Recently she asked to join The Walling Gallery as our first member from Greece.  I was overjoyed.

I read a few of her recent posts and decided to depict her currents concepts and concerns.  On her jacket we see two figures in a darkened room.  The only light comes from a classic stained glass poker light.  You might notice that the colors of the stained glass represent the colors of the Rainbow button initiative.  Blue is for the blue button, currently in place at the Veteran’s Administration allowing veterans easy access to their electronic medical record.  Green represents a desire to share medical information.  Red represents the ability make information private.  White utilizes secure email such as the direct project and allows patients to direct information where the wish to send it.  And these four colors make the light in this room.

Two people sit at the table playing poker.  To the left of the frame a female patient looks down despondently.  She has folded.  Two hands of cards lay on the table.  It appears as if the female patient has twice lost while playing a straight flush of hearts. If you add both hands together you will see ace through ten.  This represents the ten minutes the average patient has to spend with a doctor.  An hourglass to the figure’s left that has too few grains of sand within and reinforces the frustration felt due to time constraints of a clinical visit.  The female figure is too thin and appears tired.  She looks longingly at the winning “chips” held by the other player.

The other player is male. He appears to be a corporate figure in a dress shirt and tie.  He has won the hand playing a royal straight flush of spades.   Here we call a “spade a spade.”  This is an ancient expression from Greece, once used pejoratively, now it has come to represent transparent communication.    His face is concerned and distressed as he pulls the winner’s pot into his arms.  But these chips are not the ones used in any other game.  Lids and jars of prescription drugs are scattered on the tabletop.  The vital medicines pool before our corporate player as he gathers them up with a bewildered glance.

This was not supposed to happen.

This is Europe, where universal health care has often been the norm.  Greece is currently in a financial crises, and some companies are withholding vital prescriptions until the state pays past due invoices.  The people of Greece, still reeling from the economic crises, now find a health crisis upon their doorstep.

Here is Kathi working so hard for so long to improve the health care of patients in Greece.  She knows how to research her condition; she knows how to best use her ten minutes with the doctor.  And even she struggles as greater economic forces come into play affecting the world of medicine.  And that brings me back to the truths of the namesake song for this jacket.

“And it don't matter who you are: 


It treats everyone the same. 


All you need's a heart


To be a victim of the game.”