On Wednesday of this week, I was privileged to attend the Project HealthDesign Expo in Washington, DC. Not only to attend, but I was invited to deliver the lunchtime keynote address. It was an amazing experience to stand up in front of 200 health experts from industry, government, academia and advocacy organizations and talk about living with diabetes.
What I told them essentially was what I believe advancements in medicine and medical technology mean to real people with real illnesses: they represent the chance not only to survive, but to live healthy, productive, and enjoyable lives. But at the same time, there are so many people with diabetes (and other burdensome conditions) out there struggling just to make ends meet. Fancy new technology is not helpful for people who have no access to it. I hope to post the video of my talk here as soon as it’s available.
So that’s what I had to say. Meanwhile, the day was packed with presentations of innovative designs for new personal health record (PHR) applications and thought-provoking panel discussions about how tools like these can help Americans better “take charge of their own health.”
Some of the most impactful things I heard that day came directly from leaders of the Robert Wood Johnson Foundation, the high-powered healthcare non-profit behind Project HealthDesign. The Foundation was established by the man who founded Johnson & Johnson Company (he left virtually his entire personal fortune to this group).
Allow me to share five key things I heard at HealthDesign:
1) “The days of the old metal racks of medical records are officially dead” (although I personally still see them in various doctor’s offices — my kids’ pediatrician and my opthamologist, etc). All medical records are now going — or have gone — digital, and the new frontier is who can access this information and how.
2) “It’s not just about powering up your PC and viewing health data” … it’s about what you do with this information. It’s also about accessing health info from your cell phone or other device when you’re on the move, and using it to make real-time health decisions. Thus the term “PHR” for “personal health records” is likewise dying, because it’s not just about records anymore. The nine teams working in Project HealthDesign were shooting for something they’re calling “PHAs” or “personal health applications,” like a touchscreen tablet that helps seniors make sense of their various medication bottles, or a cellphone alert service to remind kids with cystic fibrosis to take their medications regularly. (Read specifics on the projects HERE)
3) “Health information is powerful, but it’s not yet in the hands of the people who need it.” Honing in on the access issue, health designers are recognizing that medical institutions have “locked up” people’s critical health information for too long, and that this is still the case for the most part. So it’s all about unlocking this data, while safeguarding people’s privacy. Tricky, but doable, they say. Note that all of this buzz you hear about cellphone-based programs that let you share glucose data with your doctors is exactly that: a key to unlocking your health records so that you can use them to improve your own health.
4) “We need a common platform.” Of course we do! Just like USB technology allows us to use a variety of devices with our computers and cellphones, we need health technology that’s interoperable. And it’s great to know that Project HealthDesign had a team specifically assigned to developing a set of software components that can eventually be offered up to the open source development community (free for anyone to develop applications on). If you’re a developer-type interested this background technology, see the set of specifications developed by experts Sujansky & Associates HERE.
5) “A lot of this is visionary. Especially for diabetes tools, we have a ways to go.” This shouldn’t be discouraging, but rather an affirmation of the fact that diabetes management is pretty freakin’ complex. There are so many factors interacting: your food intake, exercise, medications, duration of insulin action, other illness or stress, etc., etc.
Two of the design teams here developed prototype tools for diabetes management. One was a garden-variety application to wirelessly upload data over a cellphone. The other was a concept for a comprehensive computer-based program in which the patient will input a load of data on the aformentioned factors (food, activity levels, sleep, etc.) and the system will supposedly crunch this data into “specific recommendations for improving your typical routine.” They even aired a video showing a guy receiving a text message alerting him that his glucose might be getting low during a run. It also showed how the system helped him “seamlessly” eat cake — without a BG spike in sight. Clearly, not a realistic scenario just yet. But this development team, with the big aspirations, originates from the Joslin Diabetes Center (now working through the TRUE Research Foundation in Washington, DC). I’m sure that they “get it” (understand the limitations), and that they’ll be making incremental progress towards tools that actually help PWDs.
On the whole, an interesting and inspiring day. Stay tuned: I’ve got a few more related observations to share with you all next week.