I have been following Amy Tenderich, DiabetesMine.com, for some time. Recently, I got hooked into her challenge to improve the product design for diabetics and other patients. This garnered a design from Adaptive Path and lots of visibility.
Her blog is passionate and well written. The epitome of the empowered patient or, as she herself says, the "exceptionally curious patient." Being exceptionally curious about her, I wanted to know more. So I asked. Here's what she said:
Me: What did you expect to get out of blogging when you first started? What did you think your blog would be "about"?
Amy: My diagnosis came as quite a shock, and I felt terribly alone and overwhelmed. So I turned to the Internet for help. At that time, the Net offered nothing but a dizzying array of formal medical documentation and "bad-news" headlines. Patients had a very limited presence on the Web (chat and message boards), and nobody was talking turkey about what it's really like to live with this volatile disease. So I set out to create the diabetes site that I myself was looking for as a patient -- a place to share what I was learning, to "vent," and to connect with others affected by diabetes. I thought it would be mostly a personal outlet. Later, the news reporting and community advocacy dimensions just evolved; I ended up throwing myself into this thing 100%.
Me: How do you feel about it now? What do you get out of it now?
Amy: Right. Fast forward to Fall 2007. DiabetesMine is a nearly a full-time gig now. I post almost every day. My site hosts advertisers. I spend an absurd amount of time on the web, for a mother of three. I attend industry events and sit in on webcasts; people send me news tips and requests to reprint my material and pleas for help. I've learned a ton, but I am still no doctor. I'm still just watching with wonder. I remain an exceptionally curious patient with a compulsion to do something for people with diabetes.
The outpouring of appreciation has been tremendous. I'm amazed every day by the emails I get from people touched by diabetes. And I was honored to win the LillyforLife Achievement Award for diabetes journalism last summer. It's magnificent to know that all the time and energy I'm pouring into DiabetesMine.com is recognized by the community it's meant to serve.
Me: You have wrestled with a chronic condition in the established healthcare system, established a independent voice in the patient and healthcare "community", just attended Health 2.0 - what do you think the 3 biggest changes are afoot for healthcare as a result of digital innovations?
Amy: Lots of changes are on the horizon, based on everything I heard at the forward-looking Health 2.0 conference. Three "movements" of note are:
Changed RELATIONSHIPS - all these interactive tools on the Internet provide patients with information, choices, and a public voice never imaginable before. As a result, our relationships with each other, and with our doctors and our healthcare insurance plans are changing. When a patient goes to see their doctor armed with detailed questions about the new diabetes drug Januvia, for example, they not only help themselves, but also the entire patient community, by prodding that doctor to know the latest and greatest. All of that doctor's other patients will benefit from this as well. The patient also changes their relationship with the doctor from a passive teacher-student dynamic to more of a partnership.
The PERSONALIZATION of medicine - part of the movement is doing away with the "cookie-cutter" approach to medicine, because experience shows that individual patients can respond quite differently to the same dose of the same drug. Through molecular analysis, we're now able to identify genetic markers that help determine each individual's health needs. The experts tell me it won't be too long until we'll go visit our clinicians, undergo genetic testing, and then get handed a miniature hard drive containing our personal genome sequence, which can later be uploaded onto publicly accessible databases. Sounds like science fiction, but it is in fact already happening.
An OPEN MARKET approach to health - visionaries actually foresee "disengagement of the employer as the healthcare payer" which will "open up a whole new market." In a free consumer healthcare market, we might use something like a FICO score (rating of your financial credit) to rate your personal health. The better your health, the higher your score, and it would be your doctor's job to help you raise that score. If your doctor doesn't help you improve your score, that would be good grounds to find another doctor. Under this model, doctors would be directly accountable for the care they give, and patients would do a lot of shopping around!
Me: Healthcare is pushing from many directions towards the consumer more in charge of their own healthcare. Does "in charge" equate with "in control"? What has to happen to help consumers be successful at managing their health?
Amy: Through blogs, wikis, podcasts and more, consumers certainly have a more powerful voice in the healthcare arena than ever before. We are definitely in the middle of a transition toward "consumer-driven healthcare" - although I'd say many of the core concepts haven't fully materialized yet.
Education is definitely key, not least because of the potential to widen the gap between the Internet "have's" and "have-nots." There's still a large portion of the population that doesn't have access to all these nifty online tools.
What would be invaluable, for example, would be something like the experimental Expert Patients Programme launched in the UK recently. They took people living with chronic illnesses and taught them self-management skills over a six-week period, with an option for brush-up courses later on. They dealt with problem-solving, managing stress, and how people can develop positive "partnership" relationships with health care professionals. The program was a huge success, at least from the perspective of the participating patients. And I have no doubt that their long-term outcomes will be better than their counterparts who weren't in the program.
Me: What's next for you?
Amy: A lot needs to be fixed in healthcare in the US - from the insurance reimbursement model to the design of medical devices for patients with long-term illness. I view technology and social media as important factors in bridging the gap between "the system" and its consumers. I want to be an active part of the group that helps improve the situation through community involvement. I guess my specific goal is to help improve the lives of the people who depend on the healthcare system the most.
Amy is smart and influential. If you are interested at all in what an exceptionally curious patient with a great understanding of social media thinks about healthcare and 'digital health', read her blog.
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