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Archive for the ‘ePatients’ Category

I go to pharma-centric conferences and as we discuss social media, the question generally is, “How can we do social media and not get into trouble?”

I spend time with e-patients and the question is, “How can we change the world?”

Big difference.

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Keep Your Limbs to Yourself!

Every day, 225 diabetics will undergo a lower limb amputation. That’s the equivalent of a 747 full of passengers crashing every day. Of those 225, 30% will require a second amputation within three years and 50% of those 225 will die within five years of that first amputation.

Yet, it seems like no one is blogging about this silent killer — Diabetic Peripheral Neuropathy (DPN).  Of all diabetes complications, foot disease is the leading cause of hospitalization.

Join the folks from Pam Labs (disclosure: client of a friend) on Tuesday June 28th at 8pm ET in an exclusive, invite only 20-minute webinar where DPN will be discussed:
    DPN: Exactly how big is the problem? The stats, the facts, and a few key infographics
    Challenges and Unmet Needs of DPN sufferers
    Signs / Symptoms and Clinical Impact
    Current Therapeutic Strategies
    Introduction to an Emerging Therapeutic Approach
You can register to attend via this link http://budurl.com/DPNWeb.
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I’m on the Amtrak Acela, enjoying a train ride with Manny Hernandez and Kerri Sparling (a couple of well-known diabetes bloggers). I’ve been determined to know more about this increasingly prevalent disease, and given that this weekend includes World Diabetes Day, I thought I’d conduct an in-train interview with these two friends about living with diabetes. So here, they speak from the heart to the rest of us who may be quite unaware of what this disease is all about.

SW: Kerri, you were diagnosed with diabetes at about age 6. Tell me how people begin to discover that there’s a problem, leading to a diagnosis of diabetes.

KS: There’s more than one type of diabetes. I was diagnosed early on with Type 1 diabetes, which means that my pancreas basically stopped producing insulin. For me, the first indicator was onset of bed-wetting in first grade, which can be a symptom of high blood sugar. A couple of months later, a urine test confirmed that I had Type 1 diabetes.

SW: Why would someone’s pancreas stop producing insulin?

KS: It’s an auto-immune disease, and the causes are still a mystery. For me, the doctors figured there was probably some hidden genetic predisposition, triggered by a virus.

SW: Was your experience similar, Manny?

MH: Actually, no. Sometimes there’s a much longer delayed fuse on the onset, so I didn’t have symptoms and wasn’t diagnosed until I was an adult. My type of diabetes is referred to as LADA – Latent Autoimmune Diabetes in Adults. This is often misdiagnosed as Type 2 diabetes because of the later onset, when in fact it’s a form of Type 1 (we sometimes refer to it as Type 1.5).

SW: So in your case, and for many other people, there’s not someone “at fault” – this disease was not caused by bad parenting or too many lollipops…

KS: Absolutely not! Type 1 diabetes is not my fault, my parent’s fault, or anyone else’s fault. It’s a disease that I have to deal with and manage, but there’s no-one to blame.

SW: But do you still feel a sense that people, out of ignorance, try to assign blame for your diabetes?

KS: Yes, and that’s because there’s a lack of awareness about the causes of diabetes, and the various types of diabetes. Part of managing diabetes is managing the disease, and part of it, quite frankly, is managing misconceptions.

SW: In the simplest terms, what are the major differences between Type 1 and Type 2 diabetes?

MH: In Type 1, you have a malfunctioning pancreas, which no longer produces insulin. In Type 2, the body develops resistance to insulin – your body still produces it, but insulin is not able to do its job properly. Both are called diabetes, but the treatments and management strategies can be quite different.

SW: You’ve both explained to me the day-to-day, hour-by-hour management of diabetes, including a mix of regular insulin injections (or use of high-tech devices to pump insulin into your system); monitors; test strips, etc. There’s really no relief, no let-up, from keeping blood sugar levels under control, is there?

MH: No. Uncontrolled diabetes can lead to all sorts of additional health problems, so it’s vital to try to maintain consistent control. Perfect control is impossible, but good disease management is increasingly possible with the right tools and approaches. And even then, diabetes sometimes decides to do wacky things.

SW: If you could get one message across to those of us that don’t experience this disease, what would it be?

KS: That even if we don’t look sick, we still deserve a cure. Managing diabetes is a marathon, with the constant threat of health complications at every step. We have to try to do the best we can with a uncooperative pancreas, and we hope that someday we can move from unceasing measurement and management to a cessation of the disease.

MH: I would advise people to get connected – there is a very active and supportive diabetes on-line community (DOC) that can become a very valuable source of help and information – be sure to share what you’re learning with your physician.

SW: I have a lot to learn. At least I understand that I’m not going to “catch” diabetes from a doorknob or anything, right?

KS: You realize that if you keep hanging out with us your pancreas will stop working… :>}

SW: Ummmm…hey, pardon me while I head over to the Club Car…!

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This week, I enjoyed the opportunity to gather with a large number of professional colleagues at eXL Pharma’s 4th Annual Digital Pharma East conference.

I’ve attended this conference 3 or 4 times and it gets better every year. This year was no exception. The eXL team (Bryon Main, Jason Youner, Jayson Mercado, and others) did a great job organizing a multi-faceted event that contained far more variety than most of the ePharma conferences I’ve attended.

Instead of giving a recap of content (ably being done by several others – here, here, here, here, here, here, and including this very cool video essay by DoctorAnonymous, Mike Sevilla!), I’m going to list out some of my high-level impressions and perspectives as a veteran conference correspondent and industry networker.

1. It was great to have participation from savvy ePatients and ePhysicians. I can’t underscore enough how much it matters for pharma professionals to be exposed to “customers” on the ground, especially those emerging into thought leadership. Not only did I get to renew ties (and meet for the first time) some of my ePatient friends, but I was also privilege to have long discussions with Mike Sevilla (DoctorAnonymous online) and Bryan Vartabedian (Doctor_V online). Bryan ably served as co-host along with Shwen Gwee, the social media guru at Vertex Pharmaceuticals.

2. Mobile is huge. And getting huger. If you’re not thinking about the intersection of communications and mobile devices, then you’re trying to make a faster horse-and-buggy while cars whiz by.

3. We’re finally moving past the first few years of very limited social media case studies into a variety of interesting approaches and efforts. Frankly, the ePharma conference circuit was getting a bit wearisome as industry struggled with the very basics, but now the on-line efforts are maturing, and increasingly being tied into off-line (integrated) efforts (Applause from audience). The best part is that these efforts will only increase in number and creativity.

4. Including speakers who are not embedded in the industry is very smart. We enjoyed hearing from Doc Searls (one of the authors of the Cluetrain Manifesto), Bob Garfield (Advertising Age columnist), and futurist Ian Morrison. Getting high-level perspectives about cultural and technological trends definitely stirs up more creative thinking and discussion. As we all know, pharma can be very insular, and we need fresh infusions from the outside to keep us from being boxed in by our own self-made ruts.

5. There is no substitute for face-to-face networking. Attaching names to faces to feelings to ideas to potential collaboration…you cannot replace human networking with technology. This came up several times in talks as well, about the potential for pharma to be overly enamored with e-solutions such that human contact with physicians gets lost. And for me, it was a welcome chance to rub shoulders with old and new friends like Shwen Gwee (credit for photo above), John Mack, Eileen O’Brien, Gilles Frydman, Phil Baumann, Daphne Swancutt, Bruce Grant, Faruk Capan, Jess Seilheimer, Mike Myers, Ellen Hoenig, Jeff Greene, Len Starnes, Christiane Truelove, Cheryl Ann Borne, Hannah McDonald, Allison Blass, Mark Senak, Gigi Peterkin, DJ Edgerton, Cynthia North, Zoe Dunn, Kelly Dane, Chris Campbell, Quang Pham, Lance Hill, Carly Kuper, Alex Butler (who, for being an industry pioneer, won the Hawaiian shirt off of John Mack’s back!) and many others – these are the people that are shaping the future of pharma digital. And many have become good friends, both on- and off-line!

6. Having tracks and unconference sessions is a really good idea. The problem, of course, with tracks is that you want to be in more than one session at a time – but I think it’s great for drawing a more diverse set of attendees, and open discussions during unconference sessions can be very lively and invigorating (note: successful unconference sessions rely on a skillful moderator who knows how to draw others out, and at least a few people who don’t mind sharing opinions and being a bit provocative!)

Three years ago, live-tweeting a pharma conference was brand new territory. Now it’s becoming common practice. If you want dig deeper into the content, quotes, impressions, and resources shared, do a Twitter search under the hashtag #digpharm. This is also a great way to discover some of the most active folks involved in pharma social networking.

There is much more that could be said, but I can’t close without thanking the many sponsors who helped make the event possible, especially PixelsandPills, HealthCentral, and HealthEd, who sponsored social events in the evening.

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I had the privilege a couple weeks back of attending the second annual ePatient Connections conference, which I highly recommend for those in the pharma/healthcare industry.

Interacting with the growing number of influential ePatients, and hearing their perspectives, is immensely valuable. The conference is put on by Kevin Kruse and his team at Kru Research.

Here is my video recap:

Other helpful summaries of the conference can be found here, here, here, here, here, here, and here.

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