The Importance of Data and Care Coordination

This house believes that society benefits when we share information online! This was the topic of debate before the Economist magazine’s Ideas Economy: Information 2012 conference here in San Francisco on Tuesday afternoon. Tom Standage, digital editor for the Economist, moderated this lively battle of wits.

Defending the motion was John Perry Barlow, former Grateful Dead lyricist and co-founder of the Electronic Frontier Foundation. “This is a little like defending sex!” he started off by saying.

I am paraphrasing here but he went on to say, ‘The Internet is an environment where what is great about human beings can manifest itself…collectively we are much smarter than any individual. Just as my mitochondria are unaware of my thoughts, we are largely unaware of our collective genius.’

I could not agree more.

Opposing the motion was Andrew Keen, Internet entrepreneur and author of “Cult of the Amateur.”

Again, paraphrasing, ‘Repressive governments and private companies who make the 1% look poor, are also benefitting. Most of the information is being stolen,’ Keen said. ‘Today everything has to be social.’

Keen rails against our intimate selves being taken from us and traded on by bazzilionaires, with not much coming back to we, the sharers. ‘Barlow would not be who he is, if he not had his years of very aloneness,’ said Keen, paraphrased.

I wish they had spoken about who gets to monetize and how often people get consulted in the trade. These are the big questions. For me, this is why athenaCoordinator and our new orders-based pricing of athenaClinicals are so very important. It’s only fair that the people who benefit most from information are paying a small fee to those who help provide it.

BUT we are going to need to learn to cut consumers in, too, over time. We will need to give them value that lets them feel good about being added to our “big data” and probably give them a way to opt out their data, over time.

I had my turn on the stage with Heidi Messer, Co-founder of Collective[i], and Kevin Lynch, Chief Technology Officer at Adobe. Moderator Kenneth Cukier, data editor for the Economist, wasted no time in asking me how athenahealth would compensate patients for their data if it was used for a higher purpose.

To me, that data doesn’t come for free to begin with. We only gain it by performing valuable work for care providers, supporting care coordination, and giving patients better access to and expedition through the health care supply chain. As we embed ourselves more deeply in this supply chain, you can imagine a more direct way to deliver value to patients for their participation. This can come through premium discounts, pharmaceutical benefits, or simply more transparency around their personal health status and the financial and clinical consequences of their behaviors.

Lastly, I am adamant that interaction with data flows is infinitely more powerful than sampling of data piles. Most talk of “big data” seems to feel like taking “core samples” from an iceberg of existing data to find truth. NO! Core samples are cool but now we can go from big data to big flows. We can ask questions whose answers aren’t in the data yet and then answer them in the flow…then rinse, lather, repeat until we really start understanding.

This allows us to learn from data, refine our questions for it, refine what data we would need to answer those refined questions, accumulate such data over the cloud, and then iterate. Our learning is so nascent today that this iteration will be certain to roll like wildfire for a long while.

You ain’t seen nothing yet…

Jonathan Bush co-founded athenahealth, a leading provider of internet-based business services to physicians since 1997. Prior to joining athenahealth, he served as an EMT for the City of New Orleans, was trained as a medic in the U.S. Army, and worked as a management consultant with Booz Allen & Hamilton. He obtained a Bachelor of Arts in the College of Social Studies from Wesleyan University and an M.B.A. from Harvard Business School. This post first appeared at athena’s blog.

9 replies »

  1. I beg to differ with Barlow, Grateful Dead or not. I don’t believe a human collective is smarter than any individual in terms of the internet. The web is awash with misinformation and utter rubbish in the most part, with swathes of gullible folk readily believing everything they read until it becomes a strangely tangible fact. The internet of today may become the bible of tomorrow.

  2. Jerry,

    let me know about any specific cases of the “epidemic” of such med mal cases – some certainly will make it into the press or blogs.

    I see a problem with how a lot of EMR are set up. They amass mountains of data and forward parts of the data – uncritically and stupidly – to too many persons, resulting in the fact that many feel that certain cc’ed messages are devoid of meaning and that they receive too much data to go through. It’s basically a “boy who cried wolf” scenario.

    And then there is the big problem with notes containing too much cut and pasted (or template generated) data, and occasionally, relevant data gets buried and out of sight – I think they call it “note blow”. That’s basically a “the boy who cries THIS IS A NICE DAY SHEEP ARE DOING WELL DOG IS HAPPY MY FATHER WAITS ASTHOME WOLF HELP I HAVE 26 SHEEP WITH ME MY DOG’S NAME IS REX scenario.
    I am waiting to hear about the first lawsuits where these 2 issues cause EMR specific problems.

  3. Yo Jonathan,

    There is NOT a shortage of data and care coordination.

    There is an epidemic of med mal cases in which plenty of data comes back to an EHR, like yours, and no one knows it came in, eg x-ray reports, lab tests. It is like no one looking at the heart monitor when patient is in asystole.

    Ask former ONC Chief Blumenthal about his med mal lawsuit reportedly involving data that was on his EHR but no one saw it.

  4. Just to clarify; athenahealth, as far as I know, doesn’t sell data. But generally speaking, insurance companies and other healthcare related entities, do.

  5. This shouldn’t be controversial.

    The issue here – specifically with respect to medical data – isn’t really about privacy; everyone agrees that privacy is important. The monetization and sharing of data that Bush is describing is about having data that entities can share with each other, in order to improve how services are coordinated and ultimately how care is delivered.

    It’s not about whether athenahealth or other healthcare-related organizations sells data (the way consumer oriented organizations do); they do.

    Instead it’s about being able to organize the data (i.e. information) from different healthcare providers so that, for example, duplicate orders can be reduced or, as another example, providers (and researchers) can follow the patient across practices/health systems.

    Right now, that’s not happening, and various HIEs have not been very successful in putting that data together. *That* is the “better data” that’s necessary; i.e. better data isn’t different or more data – it’s putting data together intelligently.

    So, I’ll have to disagree Mr. Irvine; it is not at all silly.

  6. Healthcare cannot be improved without better data?

    That’s a silly statement. Of course it can.

    Anything can be improved.

    That doesn’t mean that better data isn’t vital. it is.

    Btut technology is only one piece of the equation.

  7. Unfortunately, I’m with Samatha G. on this issue. Privacy and confidentiality rights and protections in the US lag far behind those of Europe. Here we allow legal boilerplate language to be used to permit all types of uses of the data far beyond what most would consider the public good. We need to ask the government or courts to step in here and require strict, plain language permission for each and every use of a person’s data, not some blanket provision with all kinds of loopholes for those collecting the data to in turn profit personally from it.

  8. Ms. G,

    It’s not clear what you’re railing against.

    – What privacy and rights are being raped?
    – What are the companies that are “likes of your company”?
    – What human rights are being violated?
    – And what is the “them” that needs approval from the FDA?

    Healthcare cannot be improved without better data. And as an industry, it lags other industry in its technological sophistication and use of data.

    Imagine if your local bank still did everything on paper…

    Society progresses with better information, which is…data.

    Thank you!

  9. Sorry Jonathan, but at the recent Health Privacy Summit, the consensus was that patients’ privacy and rights are being raped by the likes of your company and othersYou are not doing enough to protect the human rights of the patients whose care is run by your devices.

    And besides, why don’t you get them apporved by the FDA?