Datapalooza Report on Data Economics and a Call for Reciprocity

Uwe Reinhardt said it perfectly in a Tuesday plenary but I can only paraphrase his point: “health information is a public good that brings more wealth the more people use it.” Or, as Doc Searls puts it: personal data is worth more the more it is used. Datapalooza is certainly the largest meeting of the year focused on health data, and our Health and Human Services data liberation army was in full regalia. My assessment is: so far, so good but, as always, each data liberation maneuver also reveals the next fortified position just ahead. This post will highlight reciprocity as a new challenge to the data economy.

The economic value of health data is immense. Without our data it’s simply impossible to independently measure quality, get independent second opinions or control family health expenses. The US is wasting $750 Billion per year on health care which boils down to $3,000 per year that each man, woman and child is flushing down the drain.

Data liberation is a battle in the cloud and on the ground. In the cloud, we have waves of data releases from massive federal data arsenals. These are the essential roadmap or graph to guide our health policy decisions. I will say no more about this because I expect Fred Trotter (who is doing an amazing job of leading in this space) will cover the anonymous and statistical aspects of the data economy. Data in the cloud provides the basis for clinical decision support.
On the ground, where $2.7 Trillion of clinical decisions are made one patient and doctor at a time, the data liberation weapon of choice is Blue Button and Blue Button+. Blue Button is the patient’s ability to download and to transmit a useful health record to Anywhere. The economic impact of Blue Button follows from the power of Anywhere to liberate data for independent analysis and even competition. Meaningful Use Stage 2 mandates this foundation for data liberation but stops well short of actually making it timely, complete or scalable to the extent required for it to have economically meaningful impact on our $3,000 per year.

Blue Button + adds automation and scalability on top of the MU2 mandate and shows us, for the first time, a path to patient-directed health reform. Blue Button + enables the cost-effective delivery of second opinions. This technolgy will allow every patient to access independent information about risks and costs. Think Consumer Reports for your costliest and most life-changing decisions.

Unfortunately for us and for the federal regulators, Blue Button + is not part of Meaninful Use Stage 2. Adoption of BB+ to the extent needed to have a real impact on health reform therefore has to be driven by public relations extravaganzas like Datapalooza, by the power of the purse in federal EHR and state health information exchange procurement and, most important, by the leadership of corporations that stand to gain from data liberation. This private-sector leadership leads to the issue of reciprocity.

Reciprocity is the commitment by every data holder that benefits from Blue Button data liberation to implement Blue Button +. Reciprocity is essential for a network effect that enables the explosion in the economic value of our personal data.

Datapalooza brings together all of the hopeful beneficiaries of data liberation: Personal health records in the cloud, personal health records on your smartphone, health records in your state health information exchange, in the state all payer claims database, in a research project or clinical trial and in all of the other private and public-sector systems that are not your health care provider or insurance company.

Data liberation reciprocity is simply the call for everyone that has data about me to give me convenient and standardized access to my data via Blue Button +. The beneficiaries of data liberation are not subject to Meaningful Use and some are not even subject to HIPAA. Their voluntary adoption of Blue Button + is absolutely essential to the network and economic effect. This is the reason for reciprocity.

Data liberation should not have to wait for even more federal regulation. The voluntary adoption of Blue Button + reciprocity by corporations that are not covered by HIPAA and HITECH will bring public pressure to bear on hospitals and state dataholders that we are forced to use to adopt Blue Button +. I expect Blue Button + in my hospital and anyone else that has my personal health data before next year’s Datapalooza.

Adrian Gropper, MD is Chief Technical Officer of Patient Privacy Rights and participates in Blue Button+, Direct secure messaging governance efforts and the evolution of patient-directed health information exchange.

4 replies »

  1. :9.5 Joe Johnson misses the great look for a three, David West gets the rebound ices the game with free throws, and now the game is over. Pacers fans, you are 7 0 for the first time in team history, go crazy!

  2. Interesting that, in the same week we gathered in DC to talk about healthcare, big data, and how it can be set free to transform the system … there’s a simultaneous sh*t-show about big-data behaving badly (or at least the gathering of same) over at the NSA over the USA-PATRIOT Act’s blanket OK on data grabs for “national security.”

    I’d love it if the ACA and HIPAA were observed with the rigor and abandon that PATRIOT seems to be, giving patients and clinicians full access and open comms to work together toward best outcomes. Gimme my dam data. Let it flow to and FROM me (upload is as important as download for patients, right?). However, the power in the system – the money – still gives me the HIPAA Heisman more often than not …

  3. To further the goal of healthcare data interoperability, there were two events about “RDF as a Universal Healthcare Exchange Language” held at the Semantic Technology and Business conference this week in San Francisco. Here is an article about it, entitled ‘Working On Taking “RDF as the Universal Healthcare Exchange Language” from Proposal to Policy at SemTechBiz’:


  4. howdy Dr Gropper

    You’re absolutely right, we need to free the data, particularly to 3rd party developers. Look at the enormous amount of innovation around the Oath standard (Linkedin, google, twitter, facebook connect all implement OAuth). Consumers don’t want data, they need information presented to them contextually. We need developers to do that!

    My startup is developing apps for doctors for google glass. We aren’t patient-facing per se, but we know the challenges very well, and have figured out some strategies to expedite and mitigate the problem. We struggle with the same issue everyday. We can talk about it more offline if you’d like at kyle@pristine.io