What Do Diabetes Patients Wish You Knew?

April 23, 2009

Diabetes is a unique disease that requires patients to be highly involved in their own care. As a result, many patients seek a relationship with a healthcare provider that offers support, options, and control. But forging that kind of relationship can be very difficult.

Just ask Amy Tenderich, who is well known in the diabetes world as a prolific writer, a knowledgeable patient, and an advocate for others who also have diabetes. Her popular blog, DiabetesMine, has become a reliable resource for both patients and healthcare professionals.

In this candid interview, Amy talks about her frustrations with the healthcare system, the system's likely frustrations with her, and her vision for technology putting more and more control in patients' hands.

Colin Son: Tell us the story of your diagnosis in 2003. What was your experience when you were trying to figure out what was going on with yourself?

Amy Tenderich: Within a few weeks, I had lost so much weight. I nearly went into a coma. That first night in the ER and hospital was the worst night of my life. A week later, when I was finally allowed to go home, all they gave me was a copy of a "sliding scale" to guide me with the syringes and insulin I was supposed to use. They didn't prepare me for treating hypoglycemia, and they never even mentioned counting carbohydrates, only quantities of food!

None of the doctors in the hospital was clear on what type of diabetes I had, either. They told me to visit an endocrinologist in a few days and that he would figure it out. But he didn't know much more. He put me on oral drugs, along with the insulin, which did nothing. The whole thing was pretty much a disaster in the beginning, and I really felt that I was cut loose to figure this thing out on my own. This is one big reason why I've become so passionate about reaching out to educate and help others wherever I can.

DiabetesMine hosts Grand Rounds
April 21, 2009

Colin Son: In a previous Medscape interview, you said, "It's such an intense disease that it often doesn't take long until you know more about it than your doctor does -- especially about your own glucose reactions and insulin requirements. This can be frustrating because you go into a doctor's appointment hoping for some leap forward in your diabetes care, and you often find yourself educating them instead." What's your relationship like right now with your physician(s)?

Amy Tenderich: I changed doctors a number of times until I found someone who is not only knowledgeable about type 1 diabetes but who also "gets me" and my lifestyle. I can't emphasize enough how important it is to find a physician and/or diabetes educator who you feel comfortable with. This is such an important relationship; it really needs to be a partnership rather than a situation in which you feel confused or talked down to as a patient.

Colin Son: If you could give one piece of advice to clinicians treating patients with diabetes, what would it be?

Amy Tenderich: Try to imagine yourself in their shoes! It simply isn't going to work if doctors are preaching at diabetes patients to eat right, live right, and be extremely disciplined while they’re indulging away without a care in the world themselves. As a physician, you have to take into account that patients have lives that are just as busy and complicated as your own -- and they enjoy food and drink just as much as you do. Try to understand their daily routines and help them fit diabetes care into those parameters, rather than thinking in black-and-white terms of "compliant" and "noncompliant."

Colin Son: How do you envision the future of diabetes care? Will technology play an important role?

Amy Tenderich: I think we need a delivery model with more built-in self-care incentives, along the lines of United Healthcare's "Diabetes Health Plan". This way, patients are constantly reminded of what they need to do -- take lab tests, step up exercise, adjust their diet -- and they are rewarded for these actions. If monitoring and rewards are built into the system, then doctors and nurse educators can spend their time as a support system for the work that the patient is already doing. This should make a huge difference in outcomes. We patients have to stop thinking of the doctor as someplace you go only when you've gotten really, really ill. And, of course, the insurance system has to support this kind of ongoing "mentoring" for chronic illness.

And technology? Yes, I am all about improved devices and programs to aid in self-care. The 2009 DiabetesMine Design Challenge is an online competition I've created to encourage creative new tools for improving life with diabetes. Anyone with an idea for an innovative new diabetes device or Web application has a chance to win up to $10,000 this year (sponsored by the California HealthCare Foundation) and to potentially help transform life with diabetes for millions of people.

Colin Son: What does the future hold for you and DiabetesMine?

Amy Tenderich: That's almost impossible to predict because social media and technology are changing so fast. My wish is to continue to be a source of valuable information for other patients, to help our online community grow, and also to help improve people's situations with diabetes in the real world.

I've been fortunate to be asked to provide input about improving diabetes care by a number of organizations that have the power to really make a difference. With this much attention and energy going into healthcare reform, I am confident that many things will be changing for the better in the foreseeable future. The biggest point, of course, is people whose health suffers because they are hurting financially. I'd love to be part of some kind of initiative to help remedy that. Got any ideas? Let me know.

On April 21, 2009, DiabetesMine hosts Grand Rounds, the weekly collection of medical blog highlights. Each week a different blogger publishes the best work of patients, physicians, nurses, students, and others interested in healthcare, offering a "carnival" of medical blogs.


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