“People who are diagnosed with rare diseases can have a hard time finding doctors who know about their illness. They often have to become experts themselves…these ‘super patients’ are helping each other and also helping researchers to find new treatments.”

It told the story of a new patient with LAM (lymphangioleiomyomatosis) and how she found a patient group upon her diagnosis. Members of the group provided her with mentoring, emotional support, disease education, and referrals to experts. The advice she received enabled her to consult with a specialist familiar with the orphan disease, ultimately leading to her canceling a surgery to remove a benign tumor on her kidney—just a half hour beforehand (in favor of effective, less invasive approaches). The group has also provided her and her family much needed education and support.

We are now entering an era where patients are becoming equal partners with their physicians in the management of their healthcare. The rare disease space is on the cutting edge of this paradigm shift, due to sheer necessity. This is because many physicians diagnosing and/or treating rare diseases don’t understand enough about the disease or treatment options. There are thousands of rare diseases—a physician may only encounter a few patients with a particular rare disease in his or her career, so staying current on all of them is virtually impossible. However, a patient or caregiver can focus all of their time and research on the one disease, leveling the playing field of understanding and making the patient/caregiver an important resource and decision-maker. Frank McCormack, director of the pulmonary, critical care and sleep medicine division at the University of Cincinnati College of Medicine, thinks that expert patients make a physician’s job easier: “I welcome it,” he said. “In general the Internet age has enhanced physician-patient relationships.”

Internet being the key word, of course – the patient empowerment movement could not have happened without the radical democratization of information that the Internet has enabled.  According to the NPR story: “The Web has been a game-changer for [patients], connecting them to others in the same boat. They share medical information and support each other on listservs, chat rooms, and now Facebook.”

Finding a connection is so critical for patients and caregivers affected by rare diseases—otherwise, most of those 25 million patients and their families would never speak with or meet another person that shares a similar experience. The connection, the support, and the information shared allows these people to feel less in the dark and less dependent on only the expertise and quality of their particular healthcare team, leading to greater knowledge and sense of control. That’s empowerment! And that’s why this fundamental shift will continue to accelerate. It’s like the spread of democracy in a repressed society—once they have a taste there’s no going back.

What does this mean for industry? Recognize that the patient (and caregiver) experience has profound influence on the commercial potential for your product, all the way from trial design (ie, dosing and relevant endpoints) to product design (how big is the needle?) to patient services and marketing. And don’t forget those Internet communities—they have tremendous power to affect perception, of course, but they also have the ability to support registries, serve as mentors, and influence other stakeholders (ie, managed care).

If you’re interested in learning more about how to leverage a true understanding of patient experience into commercial success, join us at our 2011 Innovation Lab – or give us a call!

From the article:

“Robert Nauman, principal at BioPharma Advisers and a former GSK marketing director, said the decision reflects the shift of purchasing power away from individual physicians, and toward managed care directors and office managers. “There’s less and less value in a rep visit,” said Nauman. “Reps now exist to support physicians, and provide them with relevant information faster than they can get it elsewhere”—an admittedly formidable task, Nauman said.”

I would add that the best reps – and their organizations – recognize that the most effective approach is what’s termed “the total office call” – a call plan that addresses the customer needs of not just the physician, but the nurses, PAs and office managers. This holistic approach ensures that all the influencers are reached and supported.

GSK is also (I hope!?) recognizing that the relationship between a company/brand(s) and a medical practice is more than just “selling” a product. It’s about the associated service and support provided; it’s about reimbursement services, patient support and education, medical education and practice tools. Ultimately, it’s not about YOU the brand; it’s about the PATIENT – what can be done, including medical therapy, to support the patient and guide them to a successful outcome.

At Compass we believe that there is a transformation happening in our society where consumers are taking far greater ownership of their healthcare and becoming partners in their healthcare management and decision making with their healthcare team(s). This is forcing a shift in the practice of medicine, and that, along with the pressure to manage cost and practice outcomes-based medicine, is leading to a new model of care that is PATIENT centric. Healthcare, in the future, will revolve around the Patient Experience – consumers will demand it.

GSK is taking a small but important step in evolving with this paradigm shift. I see many of our clients in the rare and orphan disease space also starting to create a sales and marketing model that reflects this new reality.

This, to me, is incredibly exciting! It’s why I’m in this business – to empower patients and improve outcomes. I know the aircraft carrier takes a long time to turn, but it’s great to see signs that we’re shifting in the right direction.

The sad reality is that, for all the millions we spend, rarely do we ever actually deliver the main thing all our customers want – robust and meaningful content (ie, information that helps the customer actually become more educated and engaged in managing their disease and therapy). We talk about it, we plan for it, but when launch day comes I think we’d all agree that what we’ve produced is an anemic substitute for what our customers desire.

We can blame it on regulatory; blame it on the FDA; blame it on budgets! But at the end of the day, we all have to take responsibility for producing materials that don’t have any hope of driving behavioral change, increasing proper utilization, or ensuring proper physician diagnosis. And that is a responsibility we all must shoulder.

As agency partners and industry experts, I insist it is our responsibility to know first and foremost what can realistically be produced due to regulatory restraints, budget limitations, etc. Stop blaming the client; start holding yourself to higher standards. Put yourself in the shoes of a patient seeking cancer treatment information; is that doctor discussion guide actually helpful? Are you providing something of value, or are you just rinse-repeating what you’ve done for the last 5+ years? Put yourself in the shoes of a specialty physician; why should he/she care about your email about Drug X? What do you possibly have to offer or tell them that they don’t already know, or care about? Are you doing anything other than cut and pasting your sales materials? I’ve got news for you folks; sales materials have intermediaries, called sales reps – and they, with relationship building and live customer service, provide a reason for being to the customer. Repurposing your sales materials with no added value or deeper content is a weak substitution with no reason for being.

One of our primary company goals at Compass this year (and beyond) is ensuring every program we develop has “meaningful content”. That means, when we go into strategic planning and design on any project, we ask ourselves the question “so what”? Why should the customer care? Why should they respond, why should they participate? How will it provide the customer value that will translate into behavioral change, and therefore brand sales? If we can’t reasonably convince ourselves of the answer, and believe that we will be able to execute upon that answer (beyond regulatory review) then it should be sent back to the drawing board.

Because without value we’re wasting our client’s money and time and, more importantly, their customer’s time as well.

The path goes something like this:

• Identify an emerging trend that presents a new marketing channel opportunity (ie, the Internet)
• Research and purchase a large, comprehensive system or platform that is a “best in class” solution for highly sophisticated marketing campaigns (think BMS and Broadvision)
• Pay an enormous sum for an outside consulting firm to determine the best way to implement the platform and train the organization…and then spend a year+ doing so
• Attempt to force brands to use the resource by mandating platform usage as well as providing partial funding and man power
• Do all this before the solution has been proven successful to brand marketers, or before they understand how to integrate it into their marketing plans

What then follows, of course, is that the platform is under leveraged and usually deemed obsolete three years later, after millions of dollars have been invested and much time wasted. Finally it took some “Cowboy” brand manager on an overlooked brand (See Famvir at Novartis, circa 2001, the first brand to utilize an online coupon) to be the first mover, which the company then used as a model for the rest of the organization.

Why didn’t this path work for “e”, and why won’t it work for HCP RM? Two reasons:

1. The company failed to follow a simple business rule – fulfill market demand. In this case, the “market” is their brand management, and no one in brand management was clamoring for a sophisticated, enterprise-wide solution. They wanted to dip their toe in, follow the guidance of their agency partners and test different solutions, different approaches. They didn’t want the 500 lb gorilla solution, and they weren’t prepared to leverage it so early in the adoption lifecycle (Neither was MLR or the rest of the organization).
2. The company tried to circumvent evolution – the most effective form of natural selection. Innovative brand marketers (aka, the “brand cowboys”) will see the new channel opportunity and find a way to test it out, to start small, to move in the right direction. If successful, this effort will grow and evolve and eventually become something comprehensive that can be replicated across other brands. Think of the early brand adopters of paid search, and how that spread like wildfire once the ROI was demonstrated! If unsuccessful, the solution will fail, without undue time or budget waste, and it will be up to the next brand or partner to do better. By starting with a massive and mandated solution, this process was overridden and platforms that did not serve the needs of the brands or the end customers were mistakenly chosen.

I certainly understand that HCP RM is complex, more complex than internet marketing, and involves many groups across the organization. Thus, no one brand cowboy can likely implement a true RM program without a lot of internal support and collaboration. However, let’s pick a cowboy on a brand that has much to benefit from RM; start small and simple, and scale up from there. Once success has been demonstrated and processes have been worked out, then consider what larger platform or system might be needed, and what other brands can be added. At the end of the day, it will have taken just as long to get the whole company on board, but the solution will be far more suited to the needs of the company/brands, it will have been proven successful in driving business and there will be meaningful support and adoption throughout marketing and the rest of the organization.