Building the Platform for the 'Health Internet'

Kristin Schneeman, Program Director, FasterCures

For two days this week, I joined a group of leading thinkers and entrepreneurs from a variety of sectors gathered to discuss an idea that originated with Harvard’s Isaac Kohane and Ken Mandl – the development of an “iPhone-like platform” for health information technology (HIT). Their basic premise, expressed in a paper published in The New England Journal of Medicine last March, is that “a vibrant and evolving health system requires a healthcare information technology infrastructure based less on monolithic, pre-defined products and more on a general-purpose platform that would support a collection of simple applications each doing a single task consistently and reliably.”

Internet pioneer Mitch Kapor started the meeting with this proposal: that the federal government expand its efforts to enable a Nationwide Health Information Network (NHIN) by engaging consumer health information platform providers and consumer health organizations as participants in the effort; instead of the status quo that focuses on standards for health information exchange among providers and government agencies. Kapor said the agenda for such an initiative would be to identify changes and extensions to NHIN specifications needed to support consumer requirements; to implement these changes in the government’s open-source CONNECT software gateway and elsewhere; with the goal of getting live patient data flowing by the second quarter of 2010.

Harvard Business School professor Clay Christensen, author of The Innovator’s Prescription on disruptive innovation in healthcare opened up day two with his analysis of what it will take to drive down costs in the healthcare system. In his view, the general hospital – which seeks to solve every problem for everybody – is no longer a sustainable business model. Care must become increasingly decentralized, and technology must be driven outward: to outpatient clinics, doctors’ offices, and even patients’ homes. In this environment, the locus of care coordination is a patient’s electronic health record. The patient/consumer must be at the center.

Lo and behold, by the end of day two, the federal government – in the form of President Obama’s Chief Technology Officer, Aneesh Chopra, and the Department of Health and Human Services’ CTO Todd Park – arrived and committed to doing exactly what Kapor had proposed. They even proposed renaming the NHIN the “Health Internet” (bless you, gentlemen). Many details remain to be worked out, of course, but the energy and enthusiasm of the dynamic duo of Chopra and Park was infectious, and many in the room committed their energy and resources to the project. The commitment of the new Administration to realizing the benefits of health IT is evident and welcome.

FasterCures’ interest in health IT is in research uses of electronic health information. We know the hosts of this meeting share the view that the value of HIT is as much in its potential to accelerate the development of new and better treatment options as it is in its ability to improve the quality of care and reduce costs. We are also interested in how patients can become drivers of disruption in the search for cures; those who suffer from disease are highly motivated to share their health information through vehicles like patient registries and social networking sites, and they are beginning to understand how they might leverage their data resources to influence the research agenda.

We hope the organizers of this new federal effort will make research uses of the network a priority, and that patient groups will be among the new stakeholders invited to the table. Then the Health Internet can revolutionize cures as well as care.