Late last month, a group of people with a big interest in diabetes – patients, advocates, designers, company representatives and FDA officials – gathered at Stanford for the DiabetesMine Innovation Summit. The second-annual event was the brainchild of DiabetesMine founder and patient advocate Amy Tenderich, who is well-known for kick-starting a movement “to help revolutionize the design of diabetes devices for the nation’s 24 million diabetics.”
In a recap of the summit on her blog, Tenderich explained that this year’s event was less about product design per se and more about “breaking the ‘gridlock’ in the diabetes industry" - ensuring that stakeholders understand patients’ needs and encouraging the industry to work more closely together so that great ideas are actually delivered to the patient.
Shortly after the event, I talked with Tenderich about her work.
You gained a bit of fame in 2007, when you wrote an open letter to the late Steve Jobs with a request to help make over the “clunky” and “clinical” medical devices - like blood glucose monitors and insulin pumps - that diabetics wear or carry around. What prompted that, and how did it help launch the innovation/design movement within the diabetes field?
Apple was making these amazing consumer devices, and the ones for diabetes patients were so yesteryear. It was kind of shocking. So I embarked on this whole campaign to get recognition of the fact that these are life devices and they need to be better designed.
The design challenge that I later launched was the first of its kind – it involved crowdsourcing and received tons of attention and media… Other organizations are now doing national innovation competitions – doing so has become more mainstream over last five years, which is great! That means we succeeded in making the point that patients need to be involved in the design process in flying colors. We gave it national attention.
How have things changed since you wrote that letter?
Many innovative products, including winners of our various design challenges, are coming to market or are about to. Two examples from companies that attended our summit are the GlucaPen, a pen injector for glucagon that is about to be submitted to the FDA for approval and is way more revolutionary than it looks, and Panacreum, a modular design for a wearable artificial pancreas that has secured funding and is on its way to market.
In the last five years, mainstream companies have also brought more consumer-friendly devices to market. OneTouch UltraMini was one of the first blood glucose meters to be offered in different colors, for example. And Sanofi's iBGStar meter, which plugs directly into an iPhone or iPod touch, is revolutionary.
It’s important that these devices be user-friendly and attractive because they’re an extension of the patient’s physical being.
You wrote on your blog that this year's summit was focused on bringing the various stakeholders together to have "very frank conversations" about the status quo and what needs to be improved. What role did patients play in this?
We did something different this year, by crowdsourcing patient needs. We ran a competition in which people submitted videos about their experiences – what’s working and what’s not. Ten winners received scholarships to attend the summit, representing the patient community.
Showing a compilation video of their calls for innovation at the event was a huge conversation starter. Many of the things patients said seemed totally obvious to me - as a patient - but they were new and eye-opening to many industry folks in the room.
The legacy of the pharmaceutical and device world was that they thought of physicians as their clients, and they would get feedback from them. But patients are actually the end-users – and we should be the ones to say whether these products work for us or not.
I’ve seen through your work just how active and vocal the diabetes community is. What is it about this patient group that makes them so willing and able to come up with creative ideas and work to improve their situation?
The diabetes patient community is one of the most assertive in advocating for themselves. Social media is also tailor-made to this type of disease – one in which 98 percent of care the patient delivers himself. It’s also very intense: It’s really, really hard to be healthy your whole life; with Type 1 diabetes, if you make a mistake, you can easily wind up in the hospital. There can be feelings like, ‘No one understands what I’m going through,’ so we seek out others for help and understanding.
Do you feel hopeful about the future?
Definitely! It feels like we’re on the verge of a seismic shift. At this event, we were able to get an amazing group of people – including people from the FDA, design firms and mHealth developers, plus physicians, patients and the Juvenile Diabetes Research Foundation and American Diabetes Association – all in one room and talking frankly, which is impressive. And next year, we hope to get payors involved.
We do need better treatment and care, and things need to be changed. But I’m not just waiting around for the powers-that-be to make it happen!
Previously: Founder of Diabetes Mine discusses the power of patient communities
Photo courtesy of Amy Tenderich