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.
Great info Amy!
Sounds like DC provided you with info to post for awhile.
While you were there many people were advocating for the Americans with Disabilities Act to be signed into law by President Bush.
This is the Last step in this Important and Vital legislation, not just for PWDs but for All Americans with a disability.
Either way, this made me laugh:
‘the system helped him “seamlessly” eat cake — without a BG spike in sight’
Why is it that people feel the need to “advertise” to PWDs with cake??!!
How about Better Health Insurance for ALL? Or less expensive strips??
We PWDs do not run on cake or even think about it that much!
Well, Great info either way and funny too….
Great synopsis of the showcase Amy!
It was great to meet you at the PHD showcase this week.
It’s been said elsewhere on the internets, but it’s worth repeating here, “The cake is a lie.” I could tell the TRUE P.I., Stephanie Fonda, wasn’t too happy with the video that was produced for her project.
I look forward to following your blog.
Thanks for the heads up on this project as I was completely unaware of it. Over the next week I’ll get a better understanding of what aspects are truly new and visionary vs. what’s been in the field for years with patients not only in diabetes but also supporting people with other health issues as well and I know you’ve reported on several of these precedents here at diabetesmine previously.
As for how well designed healthcare technology helps people with diabetes to manage, the latest results from randomized, controlled clinical trials of commercially available systems were presented this past Friday at this year’s annual Pediatric Endocrinology Society of Texas, Oklahoma, Louisiana and Arkansas held in Dallas (http://pestola.org). Warm and fuzzy focus groups and prototypes are one thing and part of the journey to a good design but real trial data from free living patients is necessary for any of this stuff to become main stream.
The trial results included the JDRF funded CGM trial presented by Dr Bruce Buckingham of Stanford and from the Lichtenstein Diabetes Research Institute funded ADMS trial by Dr Stephen Ponder of Driscoll Children’s Hospital. I think you’ve already shared the CGM trial data so I won’t rehash that other than to say this trial intentionally excluded anyone except for the brightest and most motivated to ensure a high degree of compliance. The designers of this trial wanted to understand patient benefit in the best circumstances which is a fair starting point for something new as long as everyone understands that aspect. Also, of the three groups (adults over 25, teens and kids) only the adults experienced a reduction in A1c and it was just over a half point (-0.53) for the 6 months of usage.
The other trial presented results at its mid-point and focused not on real-time sensor data but how to encourage free living people with diabetes to perform critical review of their blood sugar trends on a frequent basis using a standardized and easily understood color-coded report. The system used to collect data, analyze it and deliver it directly to the patient is provided by Diabetech (my company) thanks to a federally funded competitive grant awarded to the hospital in 2005 to improve healthcare for the people in rural America and also those who are racially disparaged by our current healthcare system. In fact, this trial design was an RWJF finalist in 2006 for their grant program to address racial disparities in health.
So far it appears that making blood sugar trends self-evident and easily available to the patient (kids under 10 regardless of demographics) is showing more than a half point reduction in A1c in the treatment group (wireless GlucoMON-ADMS and automatically delivered GlucoDYNAMIX-ADMS Day over Day trend report) vs the control group receiving conventional care (patient determined: manual logbooks, PC software, web based systems, email and fax).
Based on the data, I would add to this summary of the Project HealthDesign conference that any hope for broad based improvements in healthcare delivery systems via technology must first of all be easy for patients to use on their own (ie – ADMS) which in turn engages people to analyze their own care on a frequent basis. Secondarily, when they need advice, engaging their physician or diabetes educator is also easy and efficient for all (ie – also ADMS including the potential to integrate CGM into ADMS).
Apple’s next product: the iV-drip? …
Posted September 21, 2008 by Lygeia Ricciardi At last week’s Project HealthDesign Expo, Amy Tenderich of the blog DiabetesMine gave the keynote address. Amy is known in part for her April, 2007 open letter to Steve Jobs, in which she…
Hi Amy,
Thanks for providing your perspective of the RWJ event last week.
Couple of points:
1) PHRs are not going away, they are but a subset of a broader range of applications called PHAs. One need only look at Dossia’s “utility model” to see how this all fits together. http://chilmarkresearch.com/2007/12/05/a-utility-called-dossia/
2) Yes, wouldn’t it be grand if we could all get our data, in electronic form, from our caregivers. Unfortunately, the rosy forecast for that is just that, rosy and reality is quite a bit different as less than 20% of physicians today in the US are using an EMR. Until a value proposition s developed that makes it worthwhile for a physician to adopt an EMR, we will have to patiently wait and wait and wait.
From my vantage point, the only way this will change is when consumers start actually choosing physicians based on their ability to communicate electronically and deliver records digitally. Most consumers just aren’t there yet.
3) While I applaud RWJ for taking some initiative with PHD, I do fault them in their reliance on academic researchers and having no clear plan on commercialization strategies. Without that, these demonstrations are but nice little what-ifs and not about what the market will adopt and use.
[...] Diamond of Markle and of course several from RWJ), Amy Tenderich of DiabetesMine (she did her own post on the event), and of course the researchers who presented their concepts/prototypes. There was [...]
Good points, John. And as you noted, this project was a $5 million affair, so I too hope to see some of the teams’ new applications going commercial sooner rather than later.
[...] Diamond of Markle and of course several from RWJ), Amy Tenderich of DiabetesMine (she did her own post on the event), and of course the researchers who presented their concepts/prototypes. There was [...]
[...] to perform and support research into this disease long before it may affect me.’”Amy Tenderich, Five Things I Learned About HealthDesign: “There are so many people with diabetes (and other burdensome conditions) out there struggling [...]
Amy:
Interoperability can be achieved by software. Contact me, and I will give you the inside scoop. The mega vendors are copping out on the software solution.
Also, there is a lot happening in statewide diabetes networks from a systems perspective. How do I get your e-mail address?