There is a VERY interesting discussion going on over at the e-Patients.net blog about what the heck “Health 2.0″ actually means, and whether it can really help people.

I’ve spoken and written a lot on Health 2.0 myself, and when people ask me what the term means, I usually give them this simple two-part explanation:

1) Health 2.0 is where new, interactive web technology meets a new, more patient-centered approach to healthcare. It’s giving people access to tools and information they never had before, to empower them.

2) It’s about changing the engagement model with healthcare providers, so that “the medical establishment” treats patients more like partners in their own care.

On Part 1, I’m quite an optimist.  The great plethora of “cool new health gadgets and apps” do have a purpose, I believe: they potentially engage people in health activities to a much higher degree than ever before. I know for a fact that in our diabetes community, blogs and social networks and online logging programs have changed lives for the better.

To really succeed, these new tools are going to have to make taking good care of yourself a lot easier, and a lot more FUN. There. I said it: Human tastes are often trivial, and we’re addicted to pleasurable activities. Hmm, going on diets, losing weight, and keeping detailed records of our every food and activity — you and I both know how burdensome all that is. HATE IT!

One point of Health 2.0, as I understand it, is taking fun things like video games and applying them to the un-fun tasks of keeping yourself healthy. For those who’ve tried it, it seems to be making a difference.

But Internet & American Life researcher Susannah Fox laments that “nothing is working.” At a recent NIH conference, she reports: “Speaker after speaker talked about how nothing really works in trying to get people to change their diets for the better, to get more exercise, to save their own lives and the lives of their children.  t was a parade of one step forward, two steps back interventions: media campaigns, individual counseling, community outreach. None worked long-term.”

Hell, we know it’s hard to change people’s behavior. And it’s going to take a while for all this web-health stuff to become mainstream. But it still sounds to me like the establishment is measuring success by how “complaint” patients are with following doctor’s orders: stick to meal plans and med routines, lose weight fast, and keep detailed records of everything — oftentimes without any fun inserted, and without the kind of support that struggling patients need.

I guess what I’m saying is, if Health 2.0 seems pointless to some folks, I would argue that Part 2 of my definition above is dragging behind.

As one of Susannah’s commentors puts it:

“I guess what I’d really like is for doctors to realize that (overweight) people have probably been subjected to near-incessant questioning of their weight and lifestyle habits, from everyone. And then exercise a little intelligence and work out whether their (overweight) patient actually wants lifestyle advice or not, and learn to trust people when they answer what kind of diet habits and exercise they get up to. I can tell when a doctor doesn’t believe me and frankly it sours the whole professional relationship.”

Another says:

“Unfortunately many doctors harp on weight as a health marker to the exclusion of everything else, refuse to believe that a fat person could possibly be educated about nutrition and exercise, and treat them poorly because of it. Many believe that if a fat person does not lose weight they are ‘non-compliant’ and that they just need to do some more ‘tough love.’ The doctor’s office is not an episode of The Biggest Loser.”

To my mind, the new technologies, and giving patients access to their own extensive health records, has huge potential to help. But for a real shift to a new era of “Health 2.0,” we might have to wait for the next generation of doctors and nurses to hit the clinics — those who know how to interact with patients and function in this new environment.


{Editor’s note: for a lower-tech idea on how to help people with diabetes immediately, see yesterday’s post}

Isn’t it ironic that the multi-million-dollar companies that are most ‘part of the problem’ like to pretend that they’re ‘part of the solution’?

That’s all I could think of when learning about Pepsi’s big social-media-based “goodwill campaign” surrounding the SuperBowl this weekend. The company hopes to wow the country by relinquishing those coveted SuperBowl TV ad spots — reported to cost about $3 million this year — and vowing to spend the money on public grants for good works instead.

At the campaign website, refresheverything.com, people can submit and then vote on favorite ideas for initiatives in health, arts and culture, food and shelter, the planet, neighborhoods and education. Pepsi will offer up to 32 grants in amounts of $5,000 to $250,000.

Sounds good. But the irony runs deep.

Pepsi Co. has poured a ton of money and effort into positioning itself as a catalyst for healthier living, to be sure. See their Human Sustainability and Healthy Weight Commitment campaigns.

But who are they kidding, really?

Caption reads: "This is what I think whenever I see one of the new Pepsi ads" (cartoon by Lawrence Yang)

This is a company that in 2008, generated over $40 billion in revenue from snack foods and beverages, the bulk of which are “empty calories.”  Their product portfolio reads like a roster of the nutritionally inept “snacks” (with the word “food” being the questionable term) that has made America fat: sugary drinks including Pepsi itself, Mountain Dew and Gatorade (one of the most-abused beverages, with 30g carb, 29.5 of them sugar, per 8 oz. bottle of orange flavor) — along with Fritos, Cheetos, Doritos, Tostitos, and supposedly alternative brands like Izze fruit drinks, which parade as natural, healthy options, but are in fact pure sugar.

To boost their health-promoting image, Pepsi Co. even launched a new nutritional research lab at Yale University in December.  They’re certainly knocking themselves out to look like they’re part of the solution.  Now stop for a moment to think why…

Bingo! You got it! Because they’re a MAJOR offender in stuffing America full of salt, fat, and sugar.  That’s what their products are: fat-makers, devoid of any real nutritional value.

Their various campaign websites talk a lot about “whole grains, fiber, fruit, vegetables, key vitamins and minerals”… But THAT’S not what they’re feeding this country, is it now?

While Pepsi pours money into all these goodie-two-shoes prevention campaigns, I pose this challenge: Just what is Pepsi Co. doing about the 21 million Americans who already have diabetes?

That of course includes the rising rates of Type 2 diabetes in children, where companies like Pepsi do their most heinous pandering…

I say we challenge them to pay for FREE DIABETES EDUCATION all across the country. Every person diagnosed should have access to no-nonsense coaching on BG management and nutrition, up to eight sessions per year.

This was the proposal I wanted to submit to Pepsi’s SuperBowl “Refresh” campaign, but the site is currently closed for entries (?), slated to re-open on March 1.

Browsing the Health category, I saw a few mentions of obesity and providing healthcare coverage for the uninsured, but nothing specific to diabetes.

I say: Step it up, Pepsi. As Oprah was just trumpeting last week, diabetes is dangerously on the rise, and you are unmistakably part of the problem!

Sometimes it’s the incessant sense of failure with diabetes that gets me down.  It’s not so much about strangers making stupid comments, or even me beating myself up for not doing a perfect job of managing my BG levels every day…  it’s more about the subtle accusations of people closer to me, those who I feel ought to know better than to even hint at passing judgment.

For example, my husband (normally my best supporter and anchor in life), caught me testing post-dinner the other day. He squinted at the upside-down number on my meter, 154, and immediately said: “Whoa, that’s pretty high, isn’t it?”

Now I’m sure he didn’t mean to criticize me. But I still wanted to scream: Do you have any idea how proud I should be right now? I was LOW before dinner, then had to wild-ass-guess that crazy Chinese dish we ate. Actually, I did pretty damn well. And no, 150 is NOT that high…

Instead I mumbled off a quick explanation and left the kitchen, privately fuming. I KNOW he didn’t mean it that way, but why do I feel so judged?

Just a day or two later, I called my endo’s office to get my latest A1C result. The office manager — who’s been there for years and knows me, and should know a lot about diabetes patients by now — adopted a very stern voice as she stated my result: “It’s 6.7.”

“It went UP this time,” she added, with an unmistakable inflection in her voice.

“Yes, I know,” I said through my teeth. “But not as much as I thought it would!” (I added a little cackle here, which I now realize may have sounded rather manic.)

Did she think I didn’t know that 6.7 is higher than 6.4? Doubtful. Clearly there was some form of spotlight aiming at my ’sloppy work’ here.

After I hung up, again I had the urge to shout: Just give me the number! That’s your job. Not piling on the guilt!

Finally, as we sat around dinner with family friends recently, the conversation turned to an acquaintance who has Type 1 diabetes. He’s the successful CEO of a tech company in his mid-40’s. One of our friends explained how this man started slumping in his seat at another recent dinner party. Apparently his wife had to rouse him to test, and he clocked in at 40 mg/dL.

There were gasps around our table. What did he DO to get so low?? How could he let his diabetes get so out of hand? they all wanted to know. Such an educated man: how could he BE so irresponsible?

I cringed. And then tried to calm my voice as I explained:

“It’s easy to get it wrong, to make mistakes! It’s HARD to get it right all the time! Diabetes is far from an exact science and now matter how diligent you are, mistakes are inevitable.”

Blank stares. Then they changed the subject.

I’m just sure they were all secretly thinking: Well, if it were me, I would never let it slip like that.

Maybe I’m being oversensitive (it’s been known to happen). But things like this just make me feel like when you have diabetes, the harsh eye of judgment is always upon you. People just can’t seem to help themselves.

A penny for your thoughts, my PWD friends…

Our new Small But Mighty series is taking a look at some of the homegrown companies from folks who know diabetes the best! This week, we’re chatting with Matt Tendler, co-founder of MYLEstone Health, the company that brings us Glucose Buddy, the leading iPhone application for blood sugar logging. Matt was diagnosed with Type 1 diabetes in college and soon realized the importance of good record-keeping to manage his BG levels.

Formally trained in Business Management and Entrepreneurship at the Kelley School of Business at Indiana University, Matthew designed and implemented financial strategies for ultra high net worth clients at Merrill Lynch. But he left that world to team up with lead creator and co-founder Tom Xu to do “something more meaningful and closer to his heart.” Matt now runs marketing and long-term strategies for MYLEstone Health. Today, he shares his own D-story and how he believes Glucose Buddy is making a difference in the community.

DM) Matt, first off, please tell us your diagnosis story.

MT) I was nineteen years old and a college freshman when I was diagnosed with diabetes. At the time, I was pledging a fraternity, drinking alcohol several nights a week (mostly foreign concoctions forced upon me by fraternity brothers), and struggling to keep up with rigorous academic demands. Those college binges and trysts that had no visible impact on the bodies of my peers shocked my system, leaving me hypoglycemic one minute and hyperglycemic the next. I firmly believe that the “honeymoon stage” of my disease — that period of time immediately following type 1 diagnosis during which initial insulin shots stimulate the pancreas to produce insulin on its own — ultimately saved my life.

Equally detrimental was the psychological toll the disease took. At diagnosis the doctors tell you how to control the damage the disease takes on the body, but nothing of the damage to the mind. Upon diagnosis, I remember feeling resentful, angry, anxious and depressed. These feelings parlayed with a hackneyed college-aged excitement and sense of invincibility furthered my confusion. Confusion soon turned to a lack of control that no person like me, who loves control, can handle — and for 12 months, I struggled with severe panic attacks. Only constant blood testing remedied these fairly regular attacks.

At one point, I tested my blood glucose 30 times a day. Really, think about that for a moment… I was only awake about 15 hours per day.

I refused to sacrifice my “college experience” at the hands of my disease and ultimately determined that if I wanted to maintain a certain unhealthy lifestyle, I needed to understand by blood sugar impeccably. Ironically, the catalyst for me to test more often and log my results was wanting to keep up with my peers’ partying lifestyle.

How did you get involved in the business side of diabetes?

As an Entrepreneurship major, I was constantly asked by professors to create business plans, mock venture capital pitches, value propositions, etc. Sometimes these assignments were designed for group participation and others for individual work. No matter the design, the professors’ advice was always the same: create something that you know. Though diabetes was something I knew, I was not yet comfortable enough with my disease to share it with entire classrooms.

In 2008, I was asked by one of the top business producers in Manhattan to hold an event for his clients. The assignment was to create a seminar that would be interesting to his ultra high net-worth clients, while bringing new potential clients and companies to his doorstep.  The assignment awakened in me a passion for innovation and creative thinking. I decided to base the seminar on diabetes, symptoms and treatments, with a financial twist. I arranged for three speakers to attend: a prominent endocrinologist from Manhattan with vast knowledge of new frontiers in diabetes treatment; a hedge fund manager specializing in medical technology investments; and me, a victim of the disease.

My managers were less enthusiastic by the prospect of my seminar than I. I was disheartened, to say the least, but I thank these same limiting managers for providing the catalyst for my professional change. I thought Wall Street was the place I wanted to end up, but it left me craving the excitement of innovation, business plan creation, and integration.

How did you meet your co-founder Tom Xu?

Tom Xu and I met via the App Store. I had an idea of creating a glucose meter that was integrated with the iPhone and Tom had the most popular diabetes App on the market, a strong computer science and electrical engineering background and a number of great ideas of his own that complemented my vision. Together, we formed something called the Triware model (webware, appware, and hardware). Our educational backgrounds were different but our goal of helping people through technology was the same, so we complimented each other quite perfectly. Very early on, both of us recognized that we were a very strong two-man think tank. We spoke everyday via iChat and Email, strategizing our respective roles and working together on business initiatives. In fact, we filed a provisional patent together before we ever met face-to-face. The first time we did meet in person was the night before an important meeting in California in Tom’s office: Starbuck’s.

How did you get involved with Glucose Buddy?

Being the original founder of Glucose Buddy, Tom recognized the iPhone App Store’s potential in the medical space very early on. The iPhone was engaging, beautiful and most importantly, always with you and thus served the perfect device for health management. Glucose Buddy was the second diabetes app in the entire App Store which is now inundated with more than 30 and growing. When Tom and I created MYLEstone Health, we used the foundation that he built to take Glucose Buddy to the next level, adding tools, strategic relationships, and functionality.

How did you and Tom go about developing the next generation of Glucose Buddy?

It’s important that Tom and I work together for most of the work being performed. I have the ability to recognize what are the most important features that also make sense in the grand scheme of things. Tom has the ability to pinpoint what works and what doesn’t during the User Interface stages. One thing people often forget is that each person’s diabetes is a bit different. If we included every request from Type 1s, Type 2s, old, young, etc. then the program would be too bulky. On top of that, we make sure that the ‘insides’ of Glucose Buddy are always ready to be integrated with meters. We spend 90% of our time planning which features to include and which to exclude. You see, most App developers are just thinking about how to make the best manual entry App. We design Glucose Buddy for how our software suite is going to fit in when pumps, meters, CGMS, etc. connect to mobile phones.

Why is working on helping people with diabetes important to you?

Both Tom and I believe that consumer health-driven initiatives like what we’re doing with Glucose Buddy are the solution to a lot of problems. As people with diabetes, you and I need to be able to learn from each other more effectively. A day in our lives are filled with so many decisions and records including what we’ve eaten, what our BG numbers are, how much medication we take, how long we exercise for, etc. If we can sort out this data and share it with each other effectively (and “effectively” is the key word) we will be able to learn from one another. However, this process needs to be user-friendly and less, not more, time-consuming. In essence, we would be Glucose Buddies.

Tell me more about your partnership with Roche.

We worked with Roche to develop the ACCU-CHEK Testing In Pairs education program because manual logging just isn’t enough for our users. We want to include interactive tools in the Glucose Buddy App with the hope that they will provide deeper understanding of blood sugar levels and diabetes in general. ACCU-CHEK agrees with this mission so the companies fit well together.

Are you working on anything now? Anything we should be looking out for in 2010?

I’m not able to comment on specific new features but they all involve better ways for our Glucose Buddies to learn about their own bodies and from one another.

****

Thank you, Matt. Sounds like everyone could use a ‘Glucose Buddy’ like you, who really knows how to get things done.

Today, another example of the more things change, the more they stay the same:

In his new book Diabetes Rising, journalist Dan Hurley reports about skyrocketing numbers of children being diagnosed with Type 1 diabetes in a wealthy Boston suburb. Parents there are desperate for answers as to why this is happening, yet “the lack of a national or even statewide diabetes registry complicates efforts… we know little about what causes Type 1 diabetes.”

In other words, critical data that could clarify whether this is crazy coincidence, or some much more alarming trend is simply not there!

Below is my lament on this lack of data from back in February of 2006. I realize that the idea of a “registry” makes some people nervous. But no one’s calling for a “Big Brother” approach. Rather a little more CDC effort to gather data on cases of Type 1 by now could have been very helpful, it seems…

Confounded Statistics

Quote of the month: a lack of specific diabetes data “really does hamper us on a national level — for knowing who’s got what and where. We don’t know where to put our energies. How do you base policy on only the vaguest of data?”

— Matt Petersen, director of information for the American Diabetes Association.

Now don’t get me wrong. It’s not the ADA’s fault. I’ve been researching LADA or Type 1.5 or whatever you might like to call the onset of insulin-dependent diabetes in adults, and have discovered that no one has a very good idea how many people in this country have this disease at all. It seems even the diabetes drug and supply companies are guestimating. Kinda mind-blowing.

But what else can they do? None of the national health statistics organizations (not the CDC, NIH, or even IDF) can provide any hard numbers on overall cases of “Type 1″ diabetes, especially for the United States. The Centers for Disease Control (CDC) estimates that there are “over six million Americans with diabetes who take insulin,” but breaking down that data is anyone’s guess.

There are two main reasons for this, I’ve learned:

1) From a public health perspective, Diabetes is Diabetes. That is, it’s just a condition that requires controlling blood glucose over time to avoid serious health complications. Circa 21M people in America currently have this condition. Whether their pancreas still works, or they are fat or skinny, or taking tablets or injecting insulin doesn’t really matter that much. (Paraphrased from Petersen; he did not use the word “fat”)

The point being, the different types of diabetes are not specificed, nor even clear in many cases, according to Petersen: “Diabetes is a continuum of different problems. Some people with ‘Type 2′ have strong rates of declining insulin production. Where is the true physical dividing line?”

2) PRIVACY. It’s what America is all about (or so we like to think). We do not have centralized healthcare, nor cumpulsory tracking of health data in any way, nor do we want it — i.e. the reaction to New York’s latest attempt at monitoring diabetics. The data we do have does not come from doctor/patient records, which are strictly confidential. Rather, it comes primarily from the CDC’s three large-scale annual surveys, in which random populations of people are selected to volunteer their health information. Nationwide statics are extrapolated from this microcosm of information.

What a fuzzy way for such a huge and powerful nation to track public health, no? Petersen chuckled as he shared this illustration:

“A few years ago, a newly elected senator from the Australian parliament came to visit us. He had Type 1 diabetes himself and was on a fact-finding mission. He asked how many Americans have Type 1 diabetes? I told him we estimated half a million to one million people. He stared in disbelief. Estimated? Such a broad range?”

“So we asked him how many people had it in his country. He said, ‘In my country 3,617 people have Type 1 diabetes.’ Every one of them was tracked! Every one gets their insulin directly from the government.”

Wow. That last bit’s a whole other issue. Meanwhile, we continue to know very little about Type 1 diabetes among the American population.