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These are exciting times to be involved with the medical device and diagnostic industry. It had hit a bit of a rough patch with a bloated “me-too” market, some bad press and an investment void for early technology… but things are looking up, according to buzz on the Street.

There’s a shift occurring, and this entrepreneurial, burgeoning-teenager of a market is maturing before our very eyes. Proof points include consolidation at the top with major M&As happening as manufacturers strategically align and restructure within the confines of our new healthcare landscape and regulatory environments.

As start-ups and emerging companies continue to fuel the industry with smart and intuitive innovation, the FDA’s recent rollout of its Expedited Access Pathway (EAP) is an encouraging development that will help get life-saving innovation to patients in need, faster. And in an industry where a novel idea can still catch the eye and pocketbook of an investor, IPOs are at a healthy volume and bankers anticipate another banner year for venture-backed device and diagnostic companies, with maybe fewer but more robust investments.

I recently listened in on an industry webinar from Medtech Strategist. This, as well as other recent medical device industry reports have left me on the edge of my seat for what’s to come. But possibly even more exciting is the realization that W2O Group is in the trenches and involved from the ground up with many of the industry’s most history-making medtech.

I’ve been geeking out on medical technology since my entrée into the field with hips and knees, back when metal on metal sounded like a good idea… I’ve always been drawn to a cool, new medical device that disrupts the status quo and challenges you to think about health in a new way. And as with all big ideas that challenge the standard, sometimes you win (big) and sometimes you lose (big), but the learnings are invaluable for the field, as we’ve seen recently with renal denervation and previously in spine and orthopedics.

I’m surrounded by fellow medtech junkies here at W2O Group. And from a communications perspective, we are partly and sometimes wholly responsible for getting the word out to physicians, patients and investors about life changing, inspiring new interventional therapy options – which keeps me coming back for more everyday.

We work with some of the most promising new innovations in the market, like drug-coated stents and balloons to open clogged arteries, intuitive pacing devices for heart rhythm disorders, TAVR for valve disease and seemingly-futuristic technologies like miniature cardiac devices and ingestible sensors that truly amaze.

There is so much more on the horizon for this field in areas like diabetes, neurology, robotics, and digital health and I’m planning to have a front row seat.

Front row seat

Having spent many years in scientific research, investigating the underlying mechanisms of diabetes and trying to identify new possible ways for treatment, I have developed a great interest for this disease. To me, diabetes is so much more than just high blood glucose levels and the fact that there are two different types of the disease; it is a complex metabolic disease affecting multiple organs and parts of the body, often with serious consequences. Therefore, I am frequently surprised by the way diabetes is communicated to the general public. From many articles, people generally only receive topline information leading to a lack of clear understanding of the disease. Many falsely consider diabetes to be a simple lifestyle condition with no serious consequences and certainly do not attribute an increased risk for morbidity and mortality with the disease.

Diabetes – a disease of superlatives!

  • More than 371 million people worldwide suffer from diabetes, by 2030 this number is expected to rise to 552 million  
  • At least 183 million people (50%) with diabetes are undiagnosed
  • The majority (90%) of people with diabetes have type 2 diabetes, the vast majority (80%) of which are over-weight
  • Diabetes caused 4.8 million deaths in 2012, by 2030 diabetes is expected to be the 7th leading cause of death
  • 50% of people with diabetes die of cardiovascular disease
  • Diabetes is one of the leading causes of blindness, amputation and kidney failure
  • Global health expenditure in 2012 totaled over 471 billion USD and is expected to reach 595 billion USD by 2030

From these facts it is evident that diabetes is accompanied by a large number of secondary complications which contribute both to its complex treatment and, sadly, also to its high morbidity. In short, if you’re living with diabetes, this is not the only disease you should be concerned about. In fact the leading cause of death for people suffering from diabetes is cardiovascular disease, but kidney failure, nerve damage, amputations and vision loss are other potential secondary complications.

Moving away from 1-dimensional definitions

Historically, diabetes is defined by high levels of blood glucose, but physicians and scientist now often refer to a condition known as the ‘metabolic syndrome’. In a nutshell, this term refers to a combination of obesity, diabetes and high blood pressure. On their own, each of these symptoms increases your risk for heart disease, but having them together potentiates the risk. Last month the American Medical Association went as far as to discuss whether obesity should be classified as a disease. While this, of course, is a highly controversial and emotional topic, it emphasizes an increased awareness among physicians and the healthcare community to address the interconnectedness of metabolic imbalance and the increased risk for secondary complications.

So now what?

While education and general messaging around diabetes often centers around blood glucose levels, a matrixed approach is required to not only treat the multi-factorial aspect of the disease, but also to help patients understand the complexity of their disease.  As a communications and marketing consultancy operating in the healthcare space, we need to provide our clients with unique solutions to help simplify the messaging complexity while providing them with a platform to drive better education and healthcare initiatives. Partnering with clients in the field of diabetes requires thinking beyond the myriad of diabetes-centric messages that currently fill patient outreach campaigns. We need to bring together stakeholders that may not be the obvious choice; such as physicians and patient groups advocating in the space of cardiology, kidney disease, vision or aging. For example, vision groups may often be overlooked due to bigger associations in the cardiology, kidney or aging space but thinking about secondary complications like diabetic macular edema (DME), the most frequent cause of blindness in young and mid-aged adults, these groups can be powerful stakeholders and may help raise awareness from a new perspective.

Importantly, as diabetes can be part of the metabolic syndrome, we as communicators need to embrace all the complexities of this broader disease area by engaging with the varied groups who advocate for patients to have better access to treatment and care across all stages of disease – not just at the onset of diabetes.

In times where companies across the globe struggle to overcome market access and reimbursement hurdles and yet the definitions of disease are shifting and expanding, the importance of engaging a multi-stakeholder audience to demonstrate the value and impact of medicines is more important than ever. In Europe price cuts have been put in place for a number of diabetes drugs, with Germany going as far as to retrospectively evaluate drugs which are already launched and reimbursed. These developments call for the engagement of powerful stakeholders outside of the traditional diabetes sector to communicate the full value for patients living with the disease.

 

Pretty much since the dawn of public relations, we’ve operated on the same principle as invading aliens. We land on a particular subject, look around and say “take me to your leader.” Sometimes that is a leading advocate or a journalist with extraordinary reach or some other investor, tastemaker or celebrity. For every tribe, the reasoning goes, you can find a chief.

But the power of this approach is fading as the Internet gives rise to a new kind of group: the loosely organized, leaderless organization. The last year has been full of examples of these collectives: the vigilante hackers of Anonymous, the (more or less) spontaneous Occupy movements. But the most wonderful example is what’s happening in health care. Patients and physicians and other stakeholders are leveraging the democratic nature of the web to build true communities.

Last week, USA Today profiled a group that is making the concept a reality. A small group of women, including Jody Schoger, Alicia Staley and Dr. Deanna Attai, has organized a weekly tweetchat on breast cancer social media (known by its hashtag: #BCSM). It’s less a support group than an extended family, not just sharing advice and experiences, but the joys and sadness of everyday life. There may be no truer picture of the experience of women living with breast cancer or breast cancer survivors than what goes down each Monday night on Twitter.

And it’s not just breast cancer. The most powerful force in diabetes today may not be the well-funded organizations that have long rallied support for the disease: it’s a loose, collection of bloggers that’s known informally as the “Diabetes Online Community” (DOC, for short). No one created the DOC. No one is in charge. There’s no organization. And yet the informal network has immense power.  Ditto for doctors, too. My colleague Greg Matthews, in his rigorous evaluation of 1,400 Twitter-centric docs, found that connections between physicians is also happening outside of traditional communications channels.

But BCSM, DOC  and groups like them turn the “relations” part of “public relations” on its head. If you want to tap into that hive of information, you can’t just go to the group’s founders (though Jody, Alicia and Deanna are remarkable resources in their own right). You have to become a participant yourself. You have to watch the conversation unfold, soak in the different perspectives and understand how the fabric of the community is knit together.

Joining a community doesn’t always come naturally in communications. It requires a certain degree of vulnerability, a whole lot of transparency and the knowledge that really understanding a group requires a tremendous investment of time. That’s a high barrier to entry.

It’s a barrier that communicators will have to clear if they want to understand this new phenomenon of self-organized groups. Increasingly, top-down, bureaucracy-driven organizations are in peril, removed from grassroots supporters who no longer need a large organization to have an impact. To be sure, collectives of Twitter users won’t eliminate the need for large, groups working toward well-defined goals. But — increasingly — they’ll serve as the voice of the people. Will you be listening?

Among the many amazing conversations that we had during SxSW this year, the one that Kyle Flaherty and I had with Sanofi’s Michele Polz stands out for a number of reasons.

First, the work that’s been done by her Patient Solutions team in Sanofi’s US Diabetes franchise (WCG Client) is truly remarkable.  More on that in a moment.  The second is that they were able to build a highly visible innovation challenge, in partnership with Todd Park and the Department of Health and Human Services.  In six weeks.

The idea behind the first Data Design Diabetes Challenge, now in its second year, was born at SxSW in 2011.  The program was formally launched in June of that year at the Health Data Initiative Forum.  I’ve known global corporations that couldn’t get a twitter account started in six weeks time – much less an innovation competition that had over 100 entries, and is now supported by its own blog, twitter account and facebook page. AND, if you really want to know more, you can sign up to watch Demo Day live on May 16th.

According to Michele, the main enabler of their success was that there was an incredibly focused cross-functional team behind her, including all of the right players from their legal, regulatory and compliance teams.  The winner of that competition, ginger.io, is now being considered as a potential partner while other entrants have successfully started their own businesses.  The 2012 competition is now in full swing – you can learn more about it on the Data Design Diabetes web site. Or,

As you know, we always close these LiveFromStubbs conversations with a conversation about music and barbecue.  Michele’s shouldn’t be missed.  TEASER: Michele’s story involves Katy Perry and a law enforcement officer.  But you have to watch the video to fid out the rest. 😉

During SXSW 2012, Kerri Sparling, creator of the diabetes blog Six Until Me, was gracious enough to swing by our Austin office for an interview. As one of approximately 26 million people affected by diabetes in the United States, Sparling understands first-hand the mental, physical, and emotional impact diabetes has on peoples’ lives. She was diagnosed with type 1 diabetes at age seven (with the first symptoms presenting when she was six, hence the title of her blog), started one of the first diabetes blogs in 2005, and today is one of the most prominent and influential voices in the online diabetes community. I was excited to talk to her about what she views as social media’s impact on the online diabetes community, and what tips she has for companies looking to become involved with this community:

How do you think social media benefits patients online?

Type 1 diabetes is 24 hours a day and 7 days a week. Social media helps fill in the gaps between the information you get from your doctor during your brief visits and the actual application of that information in your health management. The community provides the emotional support that helps you deal with the day-to-day. There is empowerment in that support.

How do people with diabetes use various online channels in different ways to find support and information?

What works for one person doesn’t work for everyone. Like each person with diabetes manages their condition differently, so do they manage their social media lives differently. The ability to choose what works for you is the best part about social media. Some people just lurk anonymously, while others share everything that is on their minds. Some people seek and provide information through blogs, but doing so requires a much bigger time commitment than Twitter, for example. Many people like watching videos because they can put a face to the information, which feels more personal. Actually seeing the other person’s face helps them to remember that other “real people” are living with this disease, as well, and there’s a lot of support found in knowing you aren’t alone.

As someone who has been in the space for a long time and is well-connected, how do you think healthcare companies interact effectively with the diabetes community?

Here are a few points healthcare companies could benefit from:

  1. Develop Relationships within the Community: Developing an understanding of the online diabetes community through observation is a “good company strategy,” but it is important for companies to actually reach out to members of the community to develop actual relationships with them. Rather than simply studying community members to learn about them as patients, companies need to take an interest in patients as real people with names, lives, emotions … the whole person.
  2. Be Consistent: Having the same person or people within a company consistently engaging with me allows me to begin to trust those individuals and, as a result, the company. Earning trust is important when discussing something as personal and intimate as your health.
  3. Develop a Partnership: When a company builds real relationships with established and trusted members of a community, they also gain varying levels of understanding. Through these relationships, companies are better able to understand the various and daily hurdles patients negotiate every day, and increase their rapport. The more you put real people in front of the patient population, the more they may identify with what the company’s trying to say to them.

What is the one thing you think is most important to know regarding the online diabetes community?

It is really important to recognize the psychosocial aspect of diabetes. Diabetes is a unique disease in that it often comes with “a side of blame.” People often blame patients for having the disease, saying that they got diabetes because they did not take care of themselves.  Or that a high blood sugar number before breakfast is because “they did something wrong,” when so many times those numbers are the result of diabetes just being … diabetes.  Patients need to realize their self-worth isn’t defined by their numbers. They need to work toward good health but realize that having consistently high or low readings doesn’t mean they are bad people – it just means they need to try something new in efforts to reign things in. Acknowledging the emotional aspect of this disease isn’t enabling a patient to ignore their disease, or absolving them of any responsibility, but instead to empower them to keep trying and keep working towards the best health they can, despite the daily challenges of life with a chronic illness.

Sparling will be keynoting the Type1Now Conference 2012 on March 31 in Austin, Texas.

To learn more about Kerri Sparling, you can connect with her on these channels:

Blog: Six Until Me

Facebook: sixuntilme

Twitter: @sixuntilme

YouTube: sixuntilme

dLife: Kerri Morrone

Friending PharmaA week from Sunday, a panel of some of the leading thinkers on the topic of patient-industry relationships in health care will sit down in Austin, Texas for the “Friending Pharma” panel at the SXSW Interactive conference. It’s a vital topic: communication between health care companies and active, online patients is growing, but those relationships aren’t always straightforward: there may be perceived power imbalances, privacy concerns and legitimate questions about motivations on both sides.

The goal of the session is to reach common ground on how patients and companies can build mutually beneficial relationships. But it’s not a dialogue that should be happening only at SXSW, or only among the panelists.

So this page will serve as a repository for best practices, both leading up to the SXSW panel and beyond. Please leave your thoughts in the comments section, and we’ll update the page regularly to reflect some of the online- and in-person discussions that will be taking place, along with the names and URLs of those who contribute. What follows is just a starting point. We look forward to your feedback.

Industry Rights and Responsibilities When Dealing with Patients

  • Transparency: Companies — and their representatives — should disclose on whose behalf they work, and what their goals are.
  • Education: A company should not approach a patient without making a good-faith effort read to understand their positions
  • Engagement: A company should refrain from asking for action from a patient without first building a relationship with the individual
  • Commitment: Companies that wish to interact with individual members of an online community should first make an effort to participate, in a non-commercial way, in that forum.

Patient Rights and Responsibilities When Dealing with Industry

  • Transparency: Patients should disclose industry relationships.
  • Privacy: Patients have the right to choose how and when their information is shared or used.
  • Honesty: When companies cross the line, patients should be able to say so, directly.

Please provide your perspective below. We look forward to seeing you in Austin!