The importance of easily accessible health care data

My friend Jeff Mather recently posted on this issue. In his blog post, he pointed out a great TEDMED presentation by Thomas Goetz of Wired magazine. You can watch this presentation at http://www.youtube.com/watch?v=-P2M3nGEuIQ.

 

I have type 1 diabetes, and like many others I depend on a number of devices to control my diabetes and improve my health. For me these are:

  1. A Cozmo insulin pump, sadly no longer being marketed.
  2. A Dexcom continuous glucose monitor.
  3. A WaveSense Jazz blood glucose meter.

These collect valuable data that keeps me alive. Each device has its own software that lets me download historical data and look at it. But I cannot combine the data to get an easy to use picture of even simple things like how my insulin intake affects my blood glucose.

Most companies I've contacted to ask for information about how to download the data myself gives me one of the following answers

  1. It's proprietary information, so we're not giving it out.
  2. Here's your copy of how to do it, but it's proprietary so you can't share it with others.
  3. Here's how you do it. (Very few companies give this answer)

Now that there's more emphasis on electronic health records, I would love to see companies agree on a uniform approach to downloading data, that provides it in a standard format. Given that modem companies did this many years ago, and dramatically increased the size of their market, I believe diabetes device makers can do the same thing without being accused of illegal collaboration.

I hope to see this in the future, but I'm not holding my breath.

Views: 120

Tags: collaboration, data, diabetes, healthcare

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Comment by Bernard Farrell on March 18, 2011 at 5:49pm

@Chris, I think we're both in agreement. It's a hierarchy of data needs, if you can't get the data then it's impossible to make sense of it. HL7 is unwieldy, and purchasing it is incredibly expensive.

 

What I'd like to see is agreement on data retrieval standards just for diabetes devices. Perhaps JDRF's support of the artificial pancreas project will cause this to happen. 

Comment by Chris Cavallucci on March 16, 2011 at 4:46pm

Accessing the data is part of the problem. Making sense of the data is another. If a patient cannot access their information and make sense of it to aid their decision-making, it's a serious problem.

 

Device and systems interoperability is dependent upon wide adoption and support of standards. If you're interested in that topic, the HL7 has a list of related organizations to explore.

Comment by Bernard Farrell on February 28, 2011 at 12:36pm

Peter we also need to consider device interoperability.

For example, the artificial pancreas(AP) project plans to combine a number of devices together with algorithms to enable a closed loop system where blood glucose readings drive insulin delivery. This will probably give rise to a groups of companies collaborating to develop AP solutions.

If they took the time to agree on device hardware and software interfaces in advance, then collaboration between companies would become a lot easier, which would probably lead to more choice for their consumers down the road.

Comment by Peter Jones on February 18, 2011 at 2:10pm
What's interesting to me is that diabetes - because it requires such ongoing personal monitoring - requires vigilance and accuracy of feedback. What we learn in managing diabetes data could really inform other conditions that require continuous (but less intense) monitoring. Every health condition has its own data profile, and periodicity. Metabolic syndrome measures can be taken weekly, rather than daily, for example. I'm showing a personal health analytics model in the book for this. We need better ways to display and screen information for the decisions people actually need to make.

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