Monday, May 13, 2013

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.


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. 

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

Thank you Andrew for joining the conversation!


  1. Regina, this is just brilliant.

    Andrew at PM360: Wake up and get a clue. (I'm being blunt because your situation is critical, as in ICU critical.) You just got $50,000 of marketing consulting from Regina Holliday. (I mean that literally. If you'd engaged a PR firm for $50,000 and they successfully got this into PM360's skull, it would be worth every cent.) (I worked in marketing all my life, so I'm not being anti-establishment. Your view is mistaken.)

    If you feel defensive, squelch it and learn, buddy. Take every single word Regina said as gold. Or, really, honestly, non-snarky: find a different industry. This ain't appliances and iPhones.

    You also need to review the pivotal marketing text "Cluetrain Manifesto" about how the world of marketing has changed forever due to customers connecting with each other. The full text is online - google it. (It was published in 1999 so you're a bit behind the 8-ball.:-))

    I mentioned it in my talk at e-Patient Connections in 2010. Video:

    Part 1

    Part 2

    See also this MM&M Headliner piece from that same spring, three years ago. Example:

    “Pharma companies would do well to provide tools that help patients help themselves,” he says. “Even if they're not promoting a product, they can offer it as a service of their company. Then people who are swimming around in the current talking to each other say good things about the company because it helped them.”

    Seriously. Observe. And don't ever, ever, ever, ever try to take advantage of people whose health and families are in need. As I'm sure you know, your industry has many sleazy black eyes, and we out here have OUR eyes wide open about it.

    *Engage* with us, exactly as Regina says. Don't talk at us, and CERTAINLY don't try to get us to do freebie crap for you.

    Heck, maybe even hire her to give you some advice. Yeah, pay her. You DO find value in her words, right? You're not just using her, right? Right?

    1. Thank you Dave! You always hi the nail on the head. I do hope Andrew and PM360 are listening and learning form this feedback :)

  2. Happy (Late) Birthday. Excellent post Regina, very thought-provoking as usual.

    One of the real challenges in the age of empowered patients and self-publishing is finding a revenue model to support these activities. Just shilling for brands is not okay for most of us.

    So what is there to do? Write books, become a speaker, plaster ads everywhere, or even start a crowdfunding website? There are many paths, but I would say that as far as I know, few go beyond subsistence-level support. Our patient activism remains as a hobby for most.

    But to take Andrew's challenge, and that of the whole industry, and put that in the mix, perhaps that is an answer to how empowered patients can take their personal brands and let sponsors put their stickers on them, NASCAR style in a way that makes sense in healthcare.

    Recommending a treatment or drug makes sense for the patient who has been helped by it, but that could be construed as "Medical Advice", so that is probably a non-starter.

    Many companies are using "Patient Stories", but these often come off as insincere too.

    What people want to see are real people telling real stories in their own way without big pharma repackaging. Kind of like the way Serena Williams defines the style of her sponsors to fit her rather than the opposite. Micheal Jordan did the same with Nike too, to some extent.

    Would the presence of a Sponsor Opt-in Tip Jar on a blog like this be viable? Would companies use it, would people see it as crass commercialism? No one begrudges Jordan's Hanes commercials, but I sincerely doubt they are as effective as his Nike work. Would it be the same if Regina Holliday did a plug for earplugs?

    Another approach would be to set up an on-going Crowdfunding campaign on the right side of the blog - like a "Tip Jar" for companies to sponsor bloggers. The blogger maintains her credibility and companies like earPlanes could express their appreciation and get their brand and link in place. How many earPlanes did Regina just help sell and how much SEO did she give? These are things that have a value and if Regina can review her favorite products and be compensated just by her favorites, this could be a new way to empower patients better than ever.

    We can try it if you like, but what do YOU the readers, activists, and sponsors think?

    1. Yes, Alex, I believe people would see your Tip Jar idea as crass commercialism. Ditto that goofy NASCAR sticker concept. Corporate sponsorship is a complicated animal - and BTW, Michael Jordan's iconic relationship with Nike was ALL about money, not about him telling his 'real story'. In 2012, the Jordan brand sold $2.5 billion worth of Nike shoes at retail. That's the only story Nike wanted to hear.

    2. Thank you Alex and Carolyn for both commenting on this. Sponsorship is a tricksy animal indeed. Alex I think your world view in that comment was based on your awareness of the current struggles that patient advocates face in paying living expenses. You might want to take a step back and focus on social media itself which rarely has such clear cut revenue.

  3. Hi Regina and thanks for your comprehensive take on marketing strategies targeted at patients and our advocates.

    I think it was that question: " there any way pharma could take advantage of this kind of data and do something similar?" that got my goat.

    Take advantage? TAKE ADVANTAGE? That's the kind of unfortunate out-loud thinking that has helped industry promote what's evolved into marketing-based medicine. Or as Jeff Chester at the Center for Digital Democracy (a nonprofit group that works to safeguard user privacy) described the drug industry's influence on online patient support groups:

    “We are talking about a digital pharma stealth economy that is emerging." More on this at "Has Industry Co-Opted Patient Engagement?" -

    When a trusted blogger mentions something they happen to use and like - such as earPlanes - readers pay attention and earPlane sales may indeed go up. Not an issue.

    The shift happens when industry discovers that sales go up because a blogger mentions a product, and will then pro-actively recruit future endorsements - usually as part of their paid ad strategy.

    When a popular pain-related patient blog started doing product reviews a couple years ago (including unrelated products like acne cream or dishwasher detergents), it became patently obvious that corporate advertising was now masquerading as personal blog posts. It also helped to make readers suspicious of all future content, thus nosediving her credibility.

    Commercial approaches are the inevitable result of social media stats. Marketers look for numbers; if our numbers (thus our potential 'reach', in ad-speak) become good enough, bloggers will attract the attention of those who want to make money from us.

    Make no mistake: even an informed social media presence of companies like Lilly is formulated with the company's bottom line in mind. If they can "take advantage" of the patient voice while engaging in feel-good tweeting, it's even better for that bottom line.

    1. Hi Carolyn - in 2008 I won a national marketing award for my use of analytics, so I know what you mean by this:

      "Commercial approaches are the inevitable result of social media stats. Marketers look for numbers"

      I'll still point out to other marketing readers, though, that in marketing as in scientific research, the numbers themselves are not the goal - they are truly just a "surrogate outcome," an interim measure en route to authentic improvement. It's a scientific error, and a marketing error, to think you've gotten the improvement when so far you've just gotten the digits. :)

      Hm, just thought of a new analogy: in sports the scoreboard determines the winner - the player stats don't. Good discussion here.

    2. Yeah, that phrase was rather alarming. We try to give everyone a chance to be a decent human being in social media so I asked Andrew if I could share his request. The fact that he was willing gives me hope that he can learn from us.

      Having worked in retail for most of my adult life, I am very familiar with a focus on bottom line. But a good business focuses on quality and care as well. If we lose sight of that, all is lost.

      I will like to see our relationship advance beyond two brands talking with each other to two humans talking with each other; for at that point it is much easier to do the right thing.

  4. Being basically an outside observer and old grade school friend of Regina, I am in no way a part of the patient or medical advocacy world. I believe strongly in Regina's work and that patients often are left without choices and without voices because they are failed by the system. We must effect change, and that's about the extent of my knowledge (give or take a little).

    I'd also like to state that I'm in no way a part of the health insurance industry. However, I have been a part of the casualty insurance business for more than a couple of decades.

    That being said, one of my thoughts (though perhaps a rabbit trail from the intent of the blog) is that patient branding might bring liability upon the "brander."

    There is a vast difference in Regina saying these ear plugs worked for her and how much they helped her versus "buy these official Regina Holiday ear plugs."

    I can also see inexperienced and unsuspecting folks jumping on an "opportunity" to possibly earn "extra income" from their recommendations and personal brands, completely overlooking any negative possibilities of such exposure.

    I see a whole new "marauder" in town - very similar to scammers asking for your bank account information or asking you to click here and log in to secure your account. The danger here would be more severe than the scammers because it comes in a surreptitious form. It appears in the guise of a partnership business of sorts(brand for us and we'll pay you off), giving you the feeling of power when you're just being used.

    Does that make any sense?

    1. Thanks to my most likely red-haired friend :) from Washington Elementary. I love that you chirped in. It is a slippery slope that you speak of and one of the reasons I have no ad copy or sponsored links on my blog. There is indeed a big leap between an unpaid comment and a sponsored endorsement.

  5. The line that leapt of the page at me: "What is the best way that pharma marketers can work with patients to improve their campaigns?”

    I've been saying the following to pharma audiences for several years now: "Stop telling us to 'ask your doctor about ...' You need to start asking US 'are we helping?'"

    They're still not listening to me. I don't know if they'll be smart enough to hear you, either. This is just anther example of pharma's continued tone-deafness and lack of essential humanity: they can't stop being brand for long enough to see that, by being brand, they're no longer HUMAN.

    We are objects to them, occasionally subjects (in clinical trials or focus groups), but never are we people. Pharma is welded to their balance sheets and shareholder value, making them slaves to their own relentless selling machinery. I'm convinced that one of the reasons we've not made more progress against cancer is pharma's bottom-line mentality - they don't see the writing on the wall, that pharmacology must move toward genomic-based science, and not old-skool population-health science (works OK in most, not at all in some - we've got a blockbuster!).

    This is why I keep asking "where's my snowflake medicine?" and delivering polite, velvet-gloved bitch slaps to pharma audiences when I get the opportunity. Pharma's rearranging the deck chairs on an industry that's hit an iceberg. They don't even know they're on a ship ...

    1. Yeah, I was hoping re-calibrate their world view on that line. Thanks for reading this and so thoroughly commenting on it. I am glad you are out there every day speaking up so loudly for patients and their needs.

      I wish companies could make the leapt in realization I made a few years ago. The more art I make the better I am at art. We should not hoard our past successes but instead look for forward to the bright new creations to come. The font of creativity is endless...

  6. Oh, and you mos def should read this JCI journal article by a leading biochemist about what's wrong with pharma (from '06, even more true today)

  7. My immediate reaction is simple: unbelievable that in 2013, someone representing a magazine for pharma marketers is so incredibly clueless!

    If you're paid by pharma or, even better, pharma marketers and don't understand that the only acceptable interactions between pharma and e-patients are based on 1) conversations between equals, 2) absolute respect and, 3) listening and learning, your customers are paying for bad and dangerous advice and should demand their money back.

    Marketing in a world of networked patients has to be a lot smarter than just using KOLs as shills. In our world, marketers must be providing, to individuals, at least as much value as the value they derive from interacting with these individuals. Few have reached that point.

    1. Thanks Gilles for adding your wisdom from years in this space.

    2. Hi Gilles,
      Are you being facetious saying "unbelievable that in 2013, someone representing a magazine for pharma marketers is so incredibly clueless!" This is business as usual.
      Over the past 4 yrs I've gotten such messages regularly. Usually I delete them. Sometimes, I take (waste) my time to tell them why they're wrong. It makes no difference.
      I agree with Casey, we are treated as objects & sometimes they don't even recognize that they are doing it because they don't ever snap out of the role. It happened this week with someone who publicly praised this blog post.

      Very interesting final point about value. Would you think money could ever be part of that value they provide?
      Once last year, I promoted a survey to patients in exchange for donations to our non-profit. Since there was nothing hidden and the negotiations were respectful, it seemed like a good answer for that occasion, but not one that would work in every case.

  8. Dear Regina,
    So glad you published this. I learn from you always.

    I wondered today whether it would've made a difference if I published some of the many "Dear Blogger letters" like this I receive, instead of dumped them. If I had, some patients who read my blog & are not part of the advocacy world would say, "well, why DON'T you just do what they want? It would be good to get the patient view out there however it's used…" Some even justify plagiarism with that logic. But still, confronting the problem, as you did, is a necessary step and good push-back.

    Some dear blogger letters basically say, "Do my work for me for free. Help me make a lot of money off the community created out of your blood, sweat, and prayers." Much more I could say.. people and their information - both are traded as commodities in various industries now I guess. Health is just such a personal one.

    Yes, we do want to engage. But we want to engage as equals. And we need to be clear about what that means and what the boundaries are.

    Thanks Regina.

  9. I borrowed some of this on my blog, Regina. Best wishes!

  10. Regina - you've made excellent points and asked important questions, which was been followed by even more "posters" making even more excellent points and asking even more important questions.

    My answers come as much from my 25 years as a marketing professional as they do from my POV as an e-patient or a patient advocate and that is: Don't ever make a recommendation that will make it possible that you can do harm to yourself, or to someone else.

    In this case, that advice applies to almost every aspect of your post. It applies to e-patients or patient advocates making medical recommendations ("use this product because I do!") which might result in harm to a patient who would then use the product whether or not the product is appropriate for them (think Sally Field / Boniva or Antonio Banderas / Actonel). Suppose someone is harmed by my recommendation? That’s harmful to them, of course, and it’s the end of my reputation – which isn’t good for me.

    Whether or not I’m making a medical recommendation, I put myself at a different kind of risk if I begin helping organizations that want to influence patients in at least two additional ways. First, I have to remember that the only things I have to “sell” are my knowledge, expertise and time. When a for-profit organization asks me to help them “review this” or “analyze that” or “tell me this” – then they are asking me to work for free. I have to wonder if they go to work every day and simply donate their worktime to their employers?

    The second way is that if I would hang my hat on one answer as a brand evangelist, then I become aligned with that brand, I will no longer be considered objective and will lose credibility for everything I do. Now I’m being bought. (Think Mehmet Oz. Whether or not he is actually subsidized by all those supplements hawked on his website, people think he is.)

    Bottom line, the stick I use to measure any request for my help is the “possible harm stick” – if it can do harm to a patient or do harm to me and my reputation, then the answer is no.

    1. Thank you Trisha! You always have such a in depth perspective on such issues.

  11. Pharma profiles nearly every doctor in the US started when they are in medical school and I am fairly sure that most of the "patient advocates" have been as well. I was surprised a few years ago when many of patient advocates went to a "ePatient" conference that was arranged by the head of the national association of drug detailers (sales). Many people are or have been profiled and don't realize it.

    People asked me what does it hurt if they pay for us to speak or pay for our trips to the convention at the same time many of us have worked for years to stop the same practice of paying doctors for speaking on their drug co's.

    Now some of them have bypassed recruiting advocates and doctors and are simply buying up the healthIT systems via "free" (paid for via RX ads that put a drug rep right into the exam room with the patient) or laptops in the waiting room that deliver ads to the patients based on their presenting complaints. (but I digress).

    There is nothing wrong with being paid to speak as long as people are very clear (as you always are) how giving your voice to a sponsor means you are sharing your brand/community with them. I think being paid in fact gives more credibility by showing that the patients voices are valued.

    Nice post Regina

    1. Thank you Sherry! It is great to see you chime in on this!

  12. i think being paid in fact gives more credibility by showing that the patient voices are valued.
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  13. pharma profiles nearly every doctor in us started when they are in medical school and i m fairly sure that most of the patients advocates has been as well.
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