My Madeleine Albright Moment

I signed up for 23andMe a few years ago for professional reasons. This was before November 2013 when the FDA told 23andMe to stop providing health results. As a health care marketer, I admired how the company’s whimsical pink and green infographics made genetics both appealing and understandable.

When I mentioned to friends that I had signed up, many said that they wouldn’t want to know if there was some disease lurking in their genetic code. I’ll admit that a chill went through my body as I thought, “What if I find out something really bad?” Luckily, my repressed WASP upbringing allowed me to shelve any looming unpleasantries in the back of my mind.

When the 23andMe test results came, nothing really bad popped up. My results weren’t that earth shattering and made sense based on my family history. I was higher risk for Venous Thromboembolism (VTE) and Atrial Fibrillation.

At the time, I largely ignored the ancestral results. They were pretty lame, telling me what years of sunburnt skin told me: I was 99.9% Caucasian. As for country of origin, I knew that I was a U.K. mutt with a small German streak.

Several years went by, and 23andMe continued to email me with updates. One day in April, I happened to click on one all the way through to the ancestry data.

And that was when I had my Madeleine Albright moment: 19% ASHKENAZI.

When my mother was later tested, it revealed that she was 49% Ashkenazi, totally unbeknownst to her. We hypothesize that my maternal grandfather, Irving Crook, was probably Jewish. He came to America from England when he was 6 months old. But that didn’t mean he was of English descent. England was most likely just a stopover for his Eastern European parents escaping persecution. We will probably never really know, and most likely Irving didn’t know either.

How does this change my life? Not much. I still sing in the church choir and help organize our annual Fish & Chips dinner. However, the bigger question is what impact did my health results have on my behavior? The biggest change is that I now get up during long plane rides to help prevent blood clots, something everybody should do anyway.

I recognize that for many people, the 23andMe health results can have major consequences. Had I gotten more devastating news, it could have sent me down a rabbit hole of unnecessary, expensive and potentially dangerous medical testing. As Atul Gawande says in his recent Yorker article, “Overkill”, “Millions of Americans get tests, drugs, and operations that won’t make them better, may cause harm, and cost billions.” I also realize that not everybody is equipped to deal with bad news like Angela Jolie, who upon learning she had the BRCA gene, chose prophylactic surgery.

But despite these caveats, I think the author of “The Patient Will See You Now”, Eric Topol is right, the personal data genie is out of the bottle. In the opening pages of his book, he makes the following bold statement:

“We are embarking on a time when each individual will have all their own medical data and the computing power to process it in the context of their own world. There will be comprehensive medical information about a person that is eminently accessible, analyzable and transferable. This will set up a tectonic power shift, putting the individual at center stage.”

It is true that our health care system with its practice of defensive medicine and misaligned economic incentives has the power to distort good data into bad unintended consequences. This fear drives the cry for a more measured approach to personal health data transparency. We end up like the little Dutch boy with his finger in the dike, trying to hold back the flood of health care information.

However, the time and effort is better spent helping this free flow of personal data transform our flawed health care system into a more patient oriented system. That’s why education and good health care information are even more critical going forward. Don’t withhold information, teach people how to deal with it.

Overcoming the DTC Fear Factor

FDA gets on the “Less is More” bandwagon

The “Less is More” approach is gaining traction in health care. Fear is what often causes people to gird themselves with potentially unnecessary health care interventions: fear of getting it wrong, of missing out, of being criticized, of dying. Atul Gwande details the bravery required to challenge the medical status quo in his recent book Being Mortal. Gwande does a great job of debunking the myth of “more care is better care” when it comes to end of life treatment.

Now “Less is More” is being applied to health care communication. The FDA is overcoming the DTC Fear Factor and casting aside unnecessary risk information with the intent to drive superior patient comprehension. The FDA has issued draft guidelines that require less, not more, risk information in the Consumer Brief Summary portion of DTC print ads. PharmaGuy provides a comprehensive (and as always, entertaining) review of the proposed guidelines in his February Newsletter.

But the FDA is not using the editing pen wily-nilly. Knowledge born of research, is taking the edge off of their DTC Fear Factor. Upcoming research includes a study on the risk information presented in television ads. The objective is to see whether listing only the most actionable risks leads to better comprehension than the usual mind-numbing laundry list.

Certainly the FDA has reason to fear getting the level of risk information wrong. As Daniel Carpenter, a Harvard professor who studies the FDA posits in a Health Affairs article, the FDA is driven by it’s “desire to safeguard its reputation for protecting the public’s health.” The FDA’s “Less is More” approach certainly has its critics. Public Citizen criticized the FDA for its proposed August ’14 guidelines on how pharmaceutical companies should present risk information to physicians

This new “Less is More” approach to risk information demonstrates that the FDA is willing to undergo reputational risk to do the right thing for patients by presenting the information in a way patients can understand and act on. There is substantive evidence that links lack of patient understanding with negative health outcomes.”

So what is the likelihood of pharmaceutical review committees embracing the “Less is More” philosophy regarding risk information? Certainly the new review FDA guidelines will help, but as anybody who has sat through a review committee meeting can tell you, there is wide latitude in how FDA guidelines are interpreted. Many opt for the most conservative approach.

My guess is that review committees won’t get over their DTC Fear Factor anytime soon. There is just too much reputational risk. And it is hard to blame them. The media’s knee-jerk reaction is to attribute any misstep to a nefarious motive on the part of Pharma.

Overcoming the DTC Fear Factor will require Marketing Departments to do the hard work of proving that using fewer and simpler words to describe a product or disease state results in better comprehension. Just as the FDA Researchers helped their Reviewers get over the DTC Fear Factor with data, Pharma marketers will need data to bolster the courage of their Review Committees with solid research.

However, conducting research brings along its own “Fear Factor.” What if the language causes consumers to overestimate the efficacy or underplay the risks of the product? So why bother? In the past, trying to boost outcomes by improving communication comprehension was a “nice-to-have,” despite the compelling health literacy case.

But now, the Affordable Care Act makes reimbursement dependent on outcomes and patient experience. So ensuring patient comprehension is critical to the financial viability of Pharma’s direct customers: physicians, hospital systems and health plans. So follow the dollar. Customers care, so pharma marketers should care too.

Complexity is easy in Pharma communication, just go to the label. Eliminating the DTC Fear Factor in Pharma will take hard work. However, in health care, the “Less is More” train has left the station. Time to put fear aside, join the FDA and jump on the “Less is More” bandwagon.

Customer Experience: Consistency is key

Recently, I heard a radio ad as I was driving to work about the “spa-like” patient experience of getting a mammogram at my local hospital system. While it sounds like an over-promise, having been a patient there, I can tell you it is not.

My experience at the mammography center started with a warm greeting by a friendly receptionist. I was then whisked away into a spa-like changing room, complete with honey colored wood lockers, thick terry robes and ethereal music floating in the background. The scent of eucalyptus hung in the air. To top it all off, I got a pretty faux-pearl bracelet commemorating breast health awareness month.

But rather than float happily away, I was mad.

My experience with the very same hospital system earlier in the day couldn’t have been more different, in a negative way. I thought, if this hospital system can even make a mammogram pleasant, why was the earlier pediatric appointment for my daughter so maddening? For that appointment, I entered what looked like beige food court in a mall, little booths for each pediatric specialty ringing the room, each manned by a booth lady. Threatening signs dotted the walls cautioning against letting your children bounce on the furniture.

I approached a booth. When I simply inquired whether my daughter’s appointment was for 3 pm or for 2:45 I was told, “I don’t know when your appointment is for, just sit and wait for the doctor.”

Yes, this was the same health system.

The negative pediatric experience overshadowed any good will that surely would have blossomed from the spa-like mammogram. And this is where most patient/consumer experiences fall short: consistency. No one had bothered to think thru the entirety of the journey a patient may have in the health care system. In my case, playing different roles: parent, patient and parental caregiver.

A study by McKinsey & Company of 27,000 American consumers found that consistency is the key to customer satisfaction. The study, which spanned 14 different industries, found that focusing on the entirety of the customer experience rather than isolated events in the journey has the potential to measurably impact customer satisfaction and raise revenues up to 15%.

Given the impressive McKinsey numbers, what is preventing companies from providing a uniformly positive customer experience? In my experience advising companies in health care, it often comes down to one word: silos. Organizational silos prevent a holistic view and tracking of customer interactions across a company. Based on the experience with my local hospital system, it is pretty clear that the Mammography Center and the Pediatric Department do not share much at all.

For Pharma companies, customer experience is increasingly viewed as “the next big thing,” for differentiating products in highly competitive categories like diabetes, hepatitis C and the upcoming battle amongst PSK9 drugs for high cholesterol.

Makes sense. The Accountable Care Act links patient experience to reimbursement, so the traditional pharmaceutical customers­— HCPs, Hospitals and Payers—are now interested in how pharmaceutical companies can help them improve the patient experience. And patients themselves, accustomed to higher service levels in every other aspect of their lives, will begin to expect more from Pharmaceutical companies.

However, Pharmaceutical companies are notoriously siloed. So much so that I even know of one company where two separate customer experience projects were initiated by different departments. So imagine how difficult it will be to get people to line up behind any sort of uniform tracking approach!

Any customer experience or patient centricity effort that does not address the organizational barriers, therefore, is doomed to failure. And as I can tell you based on my experience with my local hospital system, no matter how much you advertise the positives; the inconsistencies will always pull you down.

Dorothy

Purple Cow or Bull in a China Shop?

How to make change stick

A colleague once generously called me a Purple Cow.

I say “generously” because he used the phrase as Seth Godin did, to mean someone/something intrinsically different. As a Pharma marketer, I constantly pushed for new marketing approaches. However, much of the time I tried to drive change, I probably behaved more like a bull in a china shop than a remarkable purple cow.

In fact, the Pfizer Health Literacy principles were launched internally two times because I had not fully involved my marketing colleagues the first time. After the initial launch, less than 25% of the patient literature coming out of my own department adhered to the principles. When even the people you directly supervise refer to a pamphlet written according to health literacy principles as using “dog food language” you know you haven’t done a good job socializing the concept.

As the founding partner of extrovertic, a health care consulting firm focused on delivering innovative marketing solutions, I continue to seek out new marketing approaches. However, I now appreciate the importance of involving others and managing the change process. So extrovertic has enlisted the help of a former colleague of mine, Susan Domotor, an expert in change management, to help extrovertic clients to successfully implement the change they seek to build their businesses.

According to Susan, studies show that business initiatives rolled out with less than adequate focus on the employee aspects of the change have about a 30 – 40% success rate” (Blanchard, IBM). As I found out in rolling out the Health Literacy Principles, this translates into significant amounts of wasted time and money.

Here are Susan’s top three recommendations for getting your colleagues to embrace the change you seek:

1. Create a strong business case – A business case helps people understand the importance of the change, conveys a sense of urgency for what you are trying to achieve, and generates a sense of ownership for a successful transition. A strong business case answers three questions: Why is the change necessary? What is the change? How will we achieve the change?

2. Ensure that Leadership is visibly engaged and is driving the change – Visible leadership support is critical for success and it cannot be delegated because employees will only commit to efforts that are driven by their leaders.

3. Develop a focused Communication Plan – An effective communication plan is critical to influencing employee behavior. The plan must create understanding for the initiative; provide employees opportunities to question, digest, and internalize the change; and as the initiative progresses, celebrate successes, share best practices, and capitalize on opportunities to highlight the performance and behavior that are valued in the new way of doing business. It is important to build the communication plan before kicking off your initiative. You can modify it along the way.

Change is being continually foisted on the pharmaceutical industry. Chances are that no matter what your job function, it now involves change. Whether it is to instill a new patient-centric mindset into your organization or to get your colleagues to embrace multichannel marketing for physician outreach.

Lucky for me (and patients struggling to understand health care information), my colleagues gave me a second chance. After the re-launch, over 95% of the patient pieces produced met the Pfizer Health Literacy Guidelines. But with a strong change management plan, you don’t have to count on being lucky, just being prepared.

Data is king but emotion rules

Seems every other article on marketing I read says data is king, but if you want your brand to be differentiated, you have to get emotional. While the basic tenets of “brand building 101” requires generating both rational and emotional insights, the emotion I am talking about here is different—it is about letting yourself get emotionally involved.

As business people we are taught to prize distance and rational thought. But my experience working on a Hepatitis C brand taught me that allowing yourself to get emotional generates uncommon insights and that these insights are what power brand differentiation.

Here are three ways to start the differentiating sparks flying.

First be willing to explore your hunches. Trust your gut. My client had a hunch that understanding what Hepatitis C patients went through to overcome their addictions would generate uncommon insights. About 50% of Hepatitis C patients have experience with intravenous drug use. So we conducted a deep dive into all sorts of addiction: food, drugs, alcohol and tobacco. We spoke to addiction experts and the addicts themselves. We came away with a paradigm shift in how we viewed our customers, from people with disabilities to people with special abilities. This new perspective colored our entire communication plan.

Second interact with your customers every chance you get. Get uncomfortably close. It is one thing to read that hepatitis C patients often have trouble with basic life skills. It is another to be the recipient of a panicked call at 6:30 am from a patient advocate worried about fronting the expense on an invoice slipped under her hotel door.

By getting close, you experience the patient’s issues on a deeper level. As the saying by Confucius goes, “I hear and I forget, I see and I remember, I do and I understand.” Incorporate experiential learning into your research plan along side the traditional A&U studies. You can even contract with one of those researchers that arrange for marketers to spend a loosely structured weekend with patients.
Be forewarned though, you may feel uncomfortable or awkward at times. It was personally painful for me to come face to face with my unenlightened views of addiction and evolve my thinking.

Third, try to empathize with your customers. I still remember the anguish I felt listening to one man I met at a Hepatitis C patient meeting. A former intravenous drug addict, this soft-spoken, dignified man told his story of “falling off the wagon” when his two beloved Chihuahuas died unexpectedly. But he climbed back to sobriety. We heard story after story of patients staying off drugs.

I remember thinking; I can’t even muster the discipline to resist a second helping at dinner, would I ever be able to overcome drug addiction? These people are superhero fighters. It was this insight that led to a very distinctive “boxer” campaign. The power of empathy to generate differentiating insights is abundantly clear when you compare the boxer campaign to that of the product’s main competitor.

As compelling as I hope these examples are, it is not easy to ask for money for activities that don’t have a straight linear path to the bottom line. However, know that if you do the same sort of research as your competitors, then you will end up with the same insights. Having the data on customer habits is necessary but in the end it is the emotional insights that differentiate your brand.

Tom Brady and Atul Gawande: Designing a Different End Game

Tom Brady and Atul Gawande, two Bostonians with wildly divergent careers, both take the same approach to designing a different end game; they flout the conventional wisdom to achieve their objectives. For marketers wanting to change the trajectory of their brand, company, industry or career, these two prominent Bostonians show the power of doing things differently.

Tom Brady, the New England Patriots quarterback, has always been vocal about wanting a different end game, one that would keep him playing high-level football in his 40’s. So according to a recent New York Times Magazine article, Tom defies conventional training practices designed at building strength in favor of those that create more pliable muscles. He credits his unique training practice with sparing him from career ending injuries, ultimately enabling him to win 4 Super Bowls (so far).

Atul Gawande, Boston surgeon and best selling author, challenges the more medicine is better medicine dogma that runs deep in our American cultural veins. Gawande addresses the literal “end game” in his best-selling book Being Mortal, to propose a radical new approach on appropriate care in our last years. Rather than doing everything possible to ensure maximum patient safety and longevity, Gawande contends that instead, a doctor’s role is to ensure that people leave this earth in a way that respects their values and priorities.

To do this, physicians and family members need to understand what constitutes quality of life from the patient’s point of view. In one example, Gawande tells of a daughter’s surprise at her father’s definition of quality of life as “being able to eat chocolate ice cream and watch football.” Her father had been a professor emeritus so she assumed he would not have wanted to live unless it was as a fully functioning intellectual. It was this knowledge that helped her make an entirely different choice for her father when faced with a life and death decision by her father’s surgeons.

I wasn’t so lucky with my father. The idea that more medicine, more effort, is not always appropriate was a totally foreign concept to me for most of his illness (and most of my life). So the poor guy cycled in and out of the hospital to rehab a number of times, getting weaker with every visit. By the time a palliative nurse friend of mine, helped me to see the light, it was too late. Having made the decision to bring him home after our post-dinner talk, I received a call the next morning that he had died in the Rehab institution.

While I can take comfort that my father seemed to enjoy all the attention he received at the Rehab facility, I often wonder if he would preferred a different ending. With my 88-year old mother, I have an opportunity not to make the same mistake.

The lessons of Gawande’s Being Mortal and Tom Brady’s historic Super Bowl victory transcend their individual career choices. Their work is testament to the truth of Einstein’s definition of insanity–doing something over and over again and expecting a different result. These two different men offer the same valuable lesson about the need to challenge the status quo to achieve a different result.

In the pharmaceutical industry where my company, extrovertic, does most of its work, there is a lot of organizational dogma about how to drive sales. It includes “HCPs write prescriptions, not patients,” or the time honored “the sales representative call is the best way to reach physicians.”

I know a lot of talented and progressive marketers who are confronting these doctrines on a daily basis. It’s hard work to be the one constantly going against the grain. But the experiences of Tom Brady and Atul Gawande are proof that a successful end game is worth the fight.

Building Great Brands by Talking Less About Them

You work so hard to achieve so little. Despite the amount of herculean effort involved in launching a pharmaceutical brand website, most patient never visit them. Any way you want to measure—unique visitors, click thrus, time on site— most pharmaceutical sites suffer from lack of significant consumer engagement.

But there is hope. Many brands in CPG have found a promising way to drive consumer engagement on their websites: by talking less about their brands and more about topics of more immediate relevance to their target consumers.

These brands engage in content marketing, which the content marketing institute defines as:

“the marketing and business process for creating and distributing relevant and valuable content to attract, acquire, and engage a clearly defined and understood target audience – with the objective of driving profitable customer action”

Some of the more notable examples are the Red Bull Media House, Oreo and Coke. An example closer to home is the J&J’s Global Motherhood site, which runs on the Huffington post. Half of the content is written by J&J, the other half by Huffington Post writers. Content marketing can either be developed in-house, by an agency or increasingly, in a partnership with a media company like the Huffington Post.

To me, the key for successful content marketing is that the content be rooted in the brand, but have relevance beyond the brand. On a practical level, it means taking the one word “brand essence” from the positioning document and identifying its application to the larger world.

For example, one pharmaceutical brand extrovertic did some spec work for had the brand essence of “security.” The brand at its core offered a sense of security in treating a disease with a very unpredictable course of progression.

It is easy to see that “security” has strong relevance in the wider highly unpredictable world. So a broader but very relevant communications platform for this brand would be: How to function in an unpredictable world. This content area is what I call a shared agenda, because it is both interesting to the reader and relevant to the brand.

This communication platform could spawn a wealth of interesting articles such as:

“How to tackle financial planning in uncertain times”

“5 keys to why some people handle uncertainty better than others”

“White Noise: Don Delillo’s fictional look at living with unpredictability”

“How to feel more secure in a large crowd”

Sadly the one thing that is predictable is the amount of resistance any new marketing approach will meet with in a pharmaceutical company. The direct brand building approach is so engrained. However, the results from the less direct, more content rich approach are compelling reasons to change. Content marketing can drive millions of viewers to your site. Consider J&J’s Global Motherhood campaign, which according to an article in Digiday, generated “4.3 million unique visitors and more than 570,000 social interactions on Facebook and Twitter” in its first three months.

In the digital age, great brands talk about something more than themselves if they want to be heard. So if you are unhappy with amount of patient engagement in your websites, think about using content marketing. It’s better than having to explain year after year why your numbers are so low!

Three Prescriptions for Patient Centricity

Patient Focused. Patient Centric. Patient First. There are lots of buzzwords companies use to describe their aspirations for a renewed focus on patients. But as my 8th grade Latin teacher once told me,

“The road to hell is paved with good intentions.”

Whatever phrase your company uses, here are three prescriptions on how to “walk the talk” of patient centricity in 2015 (and avoid a dance with the devil)

1. Fully infuse the voice of the patient into drug development. Historically, patient marketers are among the last to join pre-commercial or even launch teams. To be more patient focused, teams need to be staffed with patient experts early in the game.

And once in the game, patient marketers should make development of customer service and adherence programs the first order of business. As payers and patients have to increasingly make cost/quality trade-offs, it is critical that marketers can prove that their patient services actually make a difference in adherence rates, patient experience and clinical outcomes.

In fact, patient services already a factor into 3rd party purchase decisions. For example, according to a Duke physician I heard speak at a conference, Eliquis, a medication in the very crowded stroke prevention category, was chosen over competitors because the brand had the strongest co-pay assistance program.

Or just listen. Patients in clinical trials are already shaping opinions of the drug through their online conversations. An extrovertic social media analysis found an average of 30,000 patient conversations taking a place every month by patients involved a clinical trial.

2. Partner with providers and payers to meaningfully improve the patient experience at the point of care. HCPs, Integrated Delivery Systems and Payers are going to be judged on outcomes and patient experience. Pharmaceutical companies have the know-how and resources to help their customers meet the triple aim of improving patient experience, lowering costs and driving better outcomes. Take a look at all the governmental metrics requirements and pick a few to partner on.

It will also be important to have an expansive definition of point-of-care, both in terms of place where care happens and the people who provide the care. Care is now being highly distributed, it’s happening at home, at the retail pharmacy, at work, at Costco and at urgent care centers. And with the looming primary care physician shortage, care will be increasingly be delivered by nurses, physician assistants and even lay health workers.

And let’s not forget the increasing role patients are playing in their own health with the explosion of wearable technology and the whole quantified-self movement. The point of care is now everywhere and the smart pharmaceutical marketers will be conducting pilots to figure out how they can add to the patient experience.

3. Adopt a cross-channel patient experience framework to conduct marketing activities. A good patient experience is one that is consistent throughout every interaction, whether it be through a website, a phone call or in person meeting. Many of these touchpoints are managed by different functions in a pharmaceutical company, yet to the consumer it all comes from the same company. So the company has got to start acting like one company.

And this one organization needs to be reoriented towards driving patient satisfaction rather than driving sales. Driving satisfaction doesn’t mean revenue generation takes a back seat. There is a whole body of literature that proves that higher customer satisfaction scores result in higher sales and profits, in industry after industry.

But first the voice of the patient needs to be heard. This will require an integrated system of collecting patient feedback in a way it can be acted upon. For example, how well is the medical information call center doing in meeting patient needs? I would guess most marketers don’t know.

So take these 3 Rx’s and make 2015 the year that pharma companies turn patient centric talk into action. (And to my eighth grade latin teacher, Mr. Riggs, I really did “disce diligentius.”)

The Orphan Impact: Small drugs drive big changes

Seems everybody’s talking orphan drugs these days. No wonder, according to EvaluatePharma’s 2013 Orphan Drug Report, orphan drugs are estimated to reach 15.9% of total worldwide prescription sales by 2018. But the orphan drug impact goes beyond sales numbers. I believe that the patient centricity blossoming in the rare disease divisions will eventually spill over into the primary care divisions of pharmaceutical companies.

With the big blockbuster primary care drugs, development success lay primarily with company research departments. The halls of Pharma echo with stories of researcher heroics—how the lone scientist kept a molecule from hitting the drug dustbin only to become the next blockbuster.

But in orphan drugs, the heroes are as likely to be individual patient family members as researchers. In some cases the drug literally starts with patient families. Thanks to advances in digital technology and social media, orphan drug patient families play a major role in every aspect of bringing a drug to market, going far beyond traditional advocacy roles. Now individuals are able to leap tall barriers with a click of a mouse to accomplish superhero feats formerly reserved for massive organizations like the NIH and pharmaceutical companies.

Consider the role of patients, families and organizations in:

Disease discovery: Matt Might, a father whose son had a disease entirely unknown to science, leapt over barriers of scientific self-interest to find other patients and give his son’s illness a name.

A well-known blogger in his field, Matt’s post about his quest helped identify patients like his son across the globe. In the New Yorker article, which describes Matt’s disease naming odyssey, a Duke geneticist, who worked with Matt, sums up the new patient paradigm with this quote:

“It’s kind of a shift in the scientific world that we have to recognize—that, in this day of social media, dedicated, educated, and well-informed families have the ability to make a huge impact…Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’ ”

Research direction: John Crowley funded individual scientists to fill the treatment void when he learned his daughter had Pompe disease. Ultimately John ended up partnering with one scientist to form a company that eventually was folded into Genzyme. And while his story is certainly one of the most dramatic (to the point of being the subject of a major motion picture starring Harrison Ford), John’s ability to drive the course of scientific discovery is becoming more commonplace in the rare disease space.

Product approval parameters: In June 2014, the Parent Project Muscular Dystrophy (PPMD) patient group, submitted the first ever-patient advocacy-initiated draft guidance for a rare disease to the FDA for Duchenne muscular dystrophy. Patients, through organizations like the PPMD, are now directly driving how Pharma should be conducting their research.
Because of the outsized role patients and their families play in bringing a drug to market, building strong patient relationships is a key marketing investment for orphan drug marketers. For example, Biogen Idec, deployed over 15 community managers to support people with living with hemophilia even before they had an approved product.
There are already signs of an “orphan drug spillover effect” on primary care marketing. Consider Sanofi’s community manager position in their Diabetes franchise. Or more recently, that Sanofi appointed a Chief Patient Officer. And this I believe, is just the start of the orphan drug effect.

Soon the patient centric tactics of Rare Disease marketers will be highlighted in “marketing excellence” meetings all over Pharma. Then questions will come during marketing plan presentations about “why can’t primary care teams start building patient relationships like their rare disease counter parts?” And before you know it, the small seeds of patient centricity will finally blossom throughout Pharma.

Patient Shopping in Our Lifetime?

This was the one of the final questions asked at a recent Elsevier conference where I was a speaker. The panel charged with answering this question was largely pessimistic. Panelists felt that the byzantine system of setting prices for both medical procedures and pharmaceuticals made it unlikely that consumers would ever get the cost data required for effective shopping behavior. They couldn’t imagine that anyone in the industry would step up to the challenge of making prices more transparent.

There is certainly reason for their negative outlook. For example, a recent study by Verilogue and Duke Medical Center found that when oncologists discussed  breast cancer treatment options with patients, costs were only discussed in 20% of the cases. If patients can’t get information on the costs and outcomes of various medical and drug treatments, then they can’t make the appropriate trade-offs.

In my opinion, the Elsevier panel was right and wrong.

Right because strides towards increased pricing transparency won’t come from within the industry. But wrong because change will be instigated from outside the industry—by government, non-profit organizations and entrepreneurs unencumbered by the war wounds of fighting vested health care interests.

Here are a couple of examples that provide me with hope:

  • On the non-profit side, there is the Minnesota Community Measure Up coalition. They created the Minnesota D5 program, which provides effectiveness scores for treating diabetes by individual clinics/HCP offices.
  • Newer health care services like Counsyl, a genetic testing company, have actually built cost transparency into their business model. Counsyl has developed a proprietary tool that allows patients to calculate their exact costs once their particular insurance policy is factored in before they sign up for the service.
  • Iodine, a newcomer in the cost and rating business for drugs, has developed a very easy interface to help consumers start evaluating the cost/quality trade-offs for different medications.

Information will drive true shopper behavior.  Contrary to popular belief, patients can make educated choices. Patients don’t reflexively opt for latest and the greatest medical solution. As reported in the New York Times, a recent study in the Annals of Surgery, found that parents actually made the cost effective choice regarding appendectomies for their children.

When parents were told that both conventional and laparoscopic surgery yielded the same results, but that conventional surgery was far less expensive, two-thirds of parents chose the less expensive conventional surgery. 31% said that the information they received was the primary driver in their decision and 90% liked having a choice.

Pharma companies are going to have to learn how to market to health care shoppers rather than patients. This means that not only will pharmaceutical companies have to include cost in their outcomes studies with payers, they will also have to convince health care shoppers that their drugs represent a good value for the money.

And much like restaurants and hotels, Pharma companies will have to regularly monitor the various patient quality and cost rating systems to make sure their medications are fairly portrayed. A bad rating will have a direct impact on revenues, as consumers fail to start or stop using a medication, based on a rating they saw.

Pharma companies will need to include these products ratings from patient sites in their analyses of sales results. I predict that these analyses will show a direct correlation between consumer ratings and revenue. And when that happens, it will be the dawn of the era of the true health care shopper!