Last week, I participated in a terrific event out in the Bay Area, the DiabetesMine Innovation Summit. Amy Tenderich, the leading patient advocate, and her team organized a truly inspiring day of presentations and discussions.
One of the main goals was to bring together a small group of patient advocates, device designers, pharma, web, venture capital, regulatory and mobile health experts. There were presentations on the future of open models for diabetes care, an update on diabetes collaboration from the JDRF, and a patient-led discussion on device and data interoperability. The FDA, who were well represented with three staff members in attendance, also presented. Finally, a small team from IDEO led both a panel discussion and a design exercise.
As someone who is obviously interested in the use of data in diabetes care, I found the presentation by UC Berkeley’s Dr. Ikhlaq Sidhu fascinating. He talked about how diabetes software today is vertically-integrated, closed, proprietary and not standardized. He presented detailed usage statistics on how often type-1 patients and type-2 patients download their data for various types of devices. His conclusion is that approximately 1 in 10 patients download their data. A truly disappointing number, although perhaps not that surprising given the state of the industry.
Patient after patient spoke at the summit about their frustration with the current system. The multiple cables needed to connect different devices, the lack of interoperability or standardization, the data visualizations that reminded them of graphics from the 80s. Another participant noted that one device company even has competing data formats within their own product line of blood glucose meters. Patient advocate Anna McCollister-Slipp rightly pointed out how few of the device manufacturers have released software that works on Apple computers (the biggest company in the world, measured by stock market value). An FDA representative disputed the claims from device manufacturers that the approval process is too tedious (supposedly it takes only a 15 days review for software). A diversity of different voices drove home the point that patients want a better system. It truly makes you wonder why the industry is so slow to respond to their customers’ wishes. In case all the patient blogs and community forum posts weren’t clear enough, the industry certainly got an earful at the summit!
Returning to the presentation by Dr. Sidhu, he looked at how open standards had emerged in other industries such as personal computers. This slide of his is very telling:
What can we learn from the IT industry?
- Customers want open standards. It will happen.
- It only takes one player
- Change is irreversible once it happens
When it comes to diabetes IT, I certainly hope he is right! As both a patient and someone working on software for the patient community, I see tremendous opportunities to design new solutions for patients. But those advances will only be possible with access to data. There is no denying that the health care system is extremely complicated. And of course privacy issues will need to be properly addressed. But examples in the financial system (such as ATM interoperability) and infrastructure (the power grid) show that complex systems can be built to adequately address the needs of multiple stakeholders.
During Dr. Sidhu talk, I was reminded of a conversation I had last summer with a developer at R/GA who was working on a Nike+ application (Nike has recently released the FuelBand and shoes with integrated Bluetooth sensors). He talked about how on a strategy level, it took time for Nike had to come to terms with the fact that it is now also a data company, not just a sports equipment and apparel company. I expected that medical device manufacturers would have an easier time coming to terms with their similar transition. Yet their actions make it seem like they are still struggling with this issue.
I see open standards and data interoperability as one of the most important issue in diabetes care. It is obvious from the patient feedback that we are longing for a tipping point. We want a simpler and more effective solution. Patients are in an unusual position where we both rely on our devices, appreciate much of their functionality, yet remain deeply frustrated that they are not better integrated into a more complete solution. Device manufacturers seem both reluctant to build that complete solution and also reluctant to do their part in allowing it to form organically. I believe the DiabetesMine event reminded the industry partners of the growing patient pressure to evolve. Let’s hope they respond soon!