What’s missing in diabetes innovation: a new provider-patient relationship

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The above picture was taken when I spoke at the International Diabetes Federation side panel at the World Health Assembly this past May in Geneva. The quote is my perspective as it related to the session:

Access to diabetes medicines and care in underserved populations: patient, health worker, government and multilateral perspectives on policy

Access to care is a major problem around the world. Yet while we may one day solve access to meds and affordability, there’s another type of access almost none of us have. Access to providers who work with us in a way that supports and encourages sustainable self-management. Why is there no innovation on this front?

Today companies are mushrooming everywhere with new multi-purpose drugs, devices, apps and services for diabetes management. Big companies are buying little start-ups, like Roche buying the popular app MySugar last week, to have more data, data, data. Yet, no one is thinking among all this external “hardware,” where is the “heartware” people need – the connection with their provider, the confidence building – to manage their condition?

In other words: Is the quality of interaction between health care providers and people with diabetes manifesting patients who are confident, enthused, skilled and committed to their daily self-care? Mostly, no. Why?

There is no major training for providers in chronic illness. So instead providers are applying what they’ve learned, acute care and attempt to fix our numbers, they are trying to repair what they see as broken in us. While Americans over the age of sixty increasingly live with one or more chronic illnesses, we should be training health professionals a different way of working with this enormous population. And, that treating someone with a chronic illness, requires something else entirely than a condition that will heal.

We know intuitively, and there is scientific evidence, that confirms people act when they feel safe, when they feel trusting. This is actually part of our neurobiology. People take new actions when they feel there’s a chance they’ll be successful, and that’s in part because someone makes them feel that they have their back.

We can throw as many new meds, meters, and apps at people living with diabetes as R&D budgets allow. That’s the easy thing to do. But studies show it doesn’t make all that much difference helping people be more successful managing their diabetes.

However, innovating the patient-provider interaction, that’s what we should be doing to help the millions of people with diabetes who still struggle with their care. That’s what we should be doing to help those doing well, continue to do so. That’s what I’m doing.  When the doctor paid a house call fifty years ago that’s what he was doing.

The single best advice for managing blood sugar

I say this all the time – eating less carbs will make your blood sugar more stable, more in range, and make it far easier to avoid highs and lows. Many, many people with diabetes know and follow this wisdom.

Today I read it again as espoused by Adam Brown, Senior Editor with diaTribe, which happens to be a fantastic, free online newsletter covering diabetes – new meds, devices, start ups, and like Adam’s Corner, experiential wisdom. I lifted this from Adam’s post:

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For Adam’s full post click here.

How to wear a Dexcom CGM on your arm

My last post featured my recent article for the HuffPost that we have much to learn from people with illness who do well.  A few days ago, when I went to put on my Dexcom CGM, on my upper arm where I wear it, I realized that I learned how to do this from a fellow PWD, Diabetic Danica. She created just the video to guide you through the process. Here below:

I found Danica’s video when I was in Japan two years ago and thought, hmmm…I’ve seen a lot of PWDs wearing their Dexcom on their arm. How do you do that? And there she was, joyfully guiding me through the process.

Because I use my CGM intermittently, I find myself always going back to Danica’s video for instruction.

Dexcom only advises wearers to place the sensor on your abdomen because that’s the only spot they have FDA approval for. But we who wear it have discovered there are many places on the body you can wear it. The upper arm is a favorite for many – it’s unobtrusive and I find I get more days with it, more like 14 instead of 10, and it becomes accurate faster.

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Thank you Danica. I don’t know if I could have done it without you, but I’m glad I didn’t have to find out. Another round of applause for people doing well with illness.

Learning from PWDs who do well

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…I began this work interviewing people living with diabetes to learn their story. I discovered quickly that some people struggle, but many find ways to create healthier, more productive and more meaningful lives after their diagnosis…While not everyone with a chronic illness can, or will, become a model of success – genetics, skills, resources, capacity, supports, will, economics, values all count – we should not discount that in learning how successful people do well, we can help more people be successful.

Above is a photo of Rachel Zinman who’s been living with LADA for nine years, and an excerpt from my post today on Huff Post, What the “Forgotten Patient” Teaches Us.

There is much we can learn from people living well with chronic illness  – and much to inspire other’s living will illness and those who care for them, including health professionals.

Full article, click here.

 

 

The Patient Voice Represented by IDF at WHO Conference, Geneva

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That’s me in my swank jacket created by artist, health advocate Regina Holliday. I’m sitting in the ballroom of the Intercontinental hotel in Geneva waiting to introduce the International Diabetes Federation’s (IDF) new patient group, the Blue Circle Voices.

Patients are not nearly seen enough nor participants at the decision-making table. When we are, we need to shout about it so others can see our valued contribution and the good behavior of organizations that invite us in.

The IDF brought patients to the World Health Assembly meeting two weeks ago in Geneva. Here’s the larger story on the Huffington Post.

Missing type 1 diabetes in children ends lives

I know Betsy Ray, not well, but our paths have crossed at conferences. Lucky girl, she got to give this moving TEDx talk about diabetes. Its beginning caught even me unaware and  makes a point, quite dramatically, that we need to teach providers to recognize type 1 diabetes in children. Betsy goes on to give us important information. She is moving in her delivery and carries a very important message.

Headed to World Health Organization to represent IDF’s Blue Circle Voices

The Blue Circle Voices is the International Diabetes Federation’s (IDF) group of people with diabetes around the world advocating for better care in their country. We are the ear on the ground for the IDF regarding access to care, education, prevention, promotion of healthy lifestyles, discrimination – and we are the experts who live the experience of diabetes. IDF’s intent is to consult with the Blue Circle Voices on new initiatives to truly be the global voice of diabetes.

We are 102 men and women with varied types of diabetes and people connected to diabetes. We are newly created so emerging, but so far I have provided feedback on surveys, created a testimonial video, which I link below, and now will be introducing the group at the WHO in Geneva. It’s an honor.

Here’s my video where I share a personal experience of diabetes discrimination. While I personally don’t come across it often, for many it is ubiquitous in daily life.

Okay, gotta go pack!

 

Sign up for Livongo’s glucose management program and you’re making a charitable donation to diabetes research

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I’ve been using the Livongo system for the past two years and I’m a happy camper. Now the progressive company in Mountain View, California has taken another milestone step.

Livongo, a glucose management/support program (advanced meter, unlimited strips, digital tools, personalized messaging, coaching)  announced a few days ago a partnership with the American Diabetes Association, JDRF, Diabetes Hands Foundation and Beyond Type 1. They aim to generate millions of dollars for research and advocacy for their new partners. More info here.

How? By launching the Livongo Family Care Plan. That means for everyone who signs up for the plan (outlined below) through Diabetes Hands Foundation, JDRF and Beyond Type 1, Livongo will donate $3 every month to that organization. So, you in effect, are making the donation.

I use Livongo and I will tell you twice I had a professional call me when my blood sugar number was under 55 mg/dl on the meter. Standing alone in my kitchen, and having the phone ring minutes after my reading came up, with someone from Livongo asking if I was okay was amazing! Trust me, there is nothing like knowing there is someone else out there who knows you may be in trouble.

From one company that will benefit, JDRF President and Chief Executive Officer, Derek Rapp, said, “With this partnership, not only do people with type 1 diabetes benefit from access to this innovative program, JDRF also receives important funds that will go directly toward finding a cure.”

Livongo’s Family Care Plan is a comprehensive diabetes program that provides support at critical moments for people with diabetes and those who love them. The monthly subscription is $49.99/month for which you get:

• An advanced glucose meter that uploads readings and gives tips and insights. Studies verify Livongo is one of the most accurate meters around.

• Unlimited test strips – yes unlimited!

• 24/7 live outreach from diabetes specialists when numbers are out of range

• Immediate text messages to update family and friends, if you chose

• Coaching via phone, email and text for education and support

If you can benefit from a great meter, education and support, check it out, and know you’re also helping us move toward a cure.

It warms my heart to see a player in the device market come up with such a winning strategy, to help people with diabetes through their product and program, donate to diabetes charities and strengthen their own company to be able to continue to help us.

Thank you Livongo.

 

Three new books by people living with diabetes

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I have a stockpile of books everywhere – by my bed, under the coffee table, behind my computer chair. Yes, I still move in the old analog world; I like a real book in my hands.

Three that have passed through my hands recently are all diabetes books written by  those who have diabetes. They are three authors I know personally and consider friends, and they are sharing their wisdom and experience for everyone living with diabetes.

I have covered these books on the HuffPost as it’s now called. For the reviews check here for Adam Brown’s Bright Spots & Landmines: The Diabetes Guide I Wish Someone Had Handed Me and Oren Liebermann’s The Insulin Express: One Backpack, Five Continents, and the Diabetes Diagnosis That Changed Everything.

If you’re pregnant, or your wife or girlfriend is, or you plan to get pregnant, or your wife or girlfriend does, you’ll want to take a look at Ginger Vieira’s and Jennifer Smith’s book reviewed on HuffPost, Pregnancy With Type 1 Diabetes: Your Month-to-Month guide to Blood Sugar Management.

Dipping the cloth again – inside

My purpose.jpgWhile the husband is off on an intensive weekend of Chi Gong (sorry, not for me) I have used his budding spiritual growth to spur me back into my own. I learned Transcendental Meditation during college and practiced for years – until an advanced retreat course caused me to back off. But I never forgot something the man who brought this form of meditation to America, Maharishi Mahesh Yogi, said – Meditation is like dipping a cloth in paint and letting it dry in the sun. Each time you meditate, you dip the cloth in the paint again, and it retains more color – or calm.

I keep this on my desktop from Don Miguel Ruiz’s book, The Four Agreements:

  1. Be impeccable with your word
  2. Don’t take anything personally
  3. Don’t make assumptions
  4. Always do your best

This past week, thanks to the amazing library on YouTube, I have been watching Eckhart Tolle and compassion videos. On the subway I’m reading on my iPhone a book on solution-focus brief therapy. Yes, high-tech spiritual delivery. I know there’s something odd about that, and yet…

I scribbled this down from my subway read because I thought it wise to remember. The point is the value of positive emotions and what we focus our mind on, expands:

“Whether you are sitting in your living room, using the bathroom, driving your car, or riding a bus or train, ask yourself, “What is right about my current circumstances?” “What makes me lucky to be here?” “What aspect of my current situation might I view as a gift to be treasured? How does it benefit me or others?” Taking time to think in this manner ignites gratitude. Take a few moments to savor and enjoy this good feeling. Now turn positivity off. Examples of positivity-spoiling questions are “What is wrong here?” “What is bothering me?” “What should be different and better?” “Who is to blame?” Ask yourself these questions, follow the chain of thoughts they produce, and see how quickly positivity plummets.” —( 101 solution focused questions for help with depression, Fredrike Bannink).

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It’s actually quite nice to make a concerted effort to have a calm mind, breathe in and out and know in this very moment all is well. Oh, and there is one low-tech practice I’ve started to do each evening that gives me a double dose of joy. It’s writing in a gratitude journal – The five-minute journal – with my oh-i-just-love-them fountain pens.

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