June 27, 2009

Continuing on Continua

Continua maybe the path to standards for the tools used to live with type 1 diabetes. I hope it is.

I do worry about the route they take getting us there - for me Continua has a ‘Health 1.0’ feel about it. Maybe the best way to explain what I mean is by contrast.

I am moved by Amy’s calls for participatory patient care. This week she wrote about patients rights to health data. Amy is the Queen of the web 2.0 diabetes world. Advocating, leading and living the idea that patients have valuable contributions to make in their individual and collective wellness. Sorry I can’t give one specific link for that because she has written so much and so well on the subject. If you want more go click the Health 2.0 link on her banner. I am a True Believer in Amy’s Vision

The point of this 2.0 vision is that patients are critical to shaping their health process. Patient voices need to be heard not only because they are ultimately the consumer but because including patient makes for better health outcomes.

So Health 2.0 is patient participation. Health 1.0 is where the system, fronted by the Kindly Dr. (Fill in your favorite TV Dr’s name here from Dr. Kildare to Dr. House), has the all the answers.

In Continua Big Pharma, Big Tech, Big Health are playing the rolls of Drs Kildare Doggie Houser and House. They have the answers. Patients are not part of the process.

It is that lack of patients in the design process where I find Continua Health Alliance being in the 1.0 universe. There is no path for patients participating in defining the standards Continua is setting. I asked Chuck Parker Continua’s Executive Director about this, ‘So the first question that comes to my mind is there a mechanism for patient voices in the standards development process? How do patients and their needs fit into the equation?’

Chuck explained that Intel has done tens of thousands of hours of market research. He said that the member companies of the Continua Alliance employ vast numbers of people. These companies, their experience with their employee’s health care systems and their research represent the patients in the standards process.

Ouch.

Reminds anyone other than me of when Dr. Wellby says this shot won’t hurt a bit?

I think that the Diabetes Mine Design Challenge is a direct result of Big Pharma’s focus being someplace other than patient usability when they engineer the tools we use. I don’t see a track record of consumer product design that suggests Intel going to do any better. Intel’s image is far away from users, deep on the Inside, where the truly user hostile engineering is hidden.

Next I asked Chuck where I could see the format for the data set that will be used for diabetes, specifically pumps and CGMs. My curiosity being simply if there are going to be standards what the heck do they look like. Seriously how can we see that the standards are going to collect the information we need to form intelligent responses?

I concede that I can go way off the deep end on this topic. (Me going off the deep end who would have thought…) I have this strange notion that the next big step in type 1 care is going to come from bringing life’s events into the mix. Stuff like PE class, stress, growth spurts and hormonal events. That kind of information layered with our pump and blood data can maybe form a basis for adjusting type 1 therapy to lives and not the other way around.

I digress, I always digress. Before I digressed the topic was Continua and pump data. Sadly insulin pumps haven’t been worked into the Continua Health Alliance data standards – yet. So the standard can’t be shared - yet.

Chuck did say insulin pump standards are scheduled to be part of the 2.0 release of the Continua Health Alliance standards next summer. He was unable to say if CGM data was going to be part of that next release of the standards.

The next generation of pumps are being designed now. Then they go to the FDA for blessing. Since there will not be pump standards until next year and then the pump companies will need to get them into pumps and those pumps off to FDA for blessings, I don’t see how the type 1 community can expect Continua to be a relevant in pump technology anytime soon.

Maybe the upside here is that 'no time soon means' we can reach out and touch some one, like our vendors who happen to be in the Continua Alliance and let them know we believe in health 2.0.

How convenient there’s a big type 1 gathering in Orlando next week

1 comment:

Akiba said...

I think you're on the right track. Users needs should be the main priority in any design. Hopefully open source projects can pick up where corporate behemoths leave off :)

Akiba
FreakLabs Open Source Zigbee Project