
The
current initiatives coming out of the ARRA and HITECH legislation are a collection
of standards, protocols, legal agreements, specifications, and services that
enables the secure exchange of health information using the Internet as the
pathway and technology. Getting even to the point of talking about a national
HIE has grown from a number of starting points.
Back in 1990 the Hartford Foundation
offered grants to several states and cities to set up community health
management information systems to create central repositories for
individual-level demographic, clinical, and eligibility information. Those data
were to be used by stakeholders such as local agencies, payers, employers, and
researchers for assessment activities. Secondarily, they were to create
transaction systems to facilitate billing and patient eligibility information
to reduce costs. Hampered by primitive technology, especially to costs for
networks and related technology but also discovered that the lack of standards
for data integration hampered their efforts. Moreover, they ran into political
resistance from some providers who even got a law passed in Iowa to prevent the
exchange from succeeding because of privacy and security concerns as well as ultimate control of the data—issues that persist even today.
Finally, they never grew beyond the grant-funded approach to become self-sustaining.
Another effort was the community health
information networks, CHINs, that were primarily commercial endeavors. The
prioritized savings rather than quality assessment objectives. They took a very
different approach and emphasized data transfer as their mode of sharing rather
than having a centralized repository. Nevertheless, most did not make it out of
the 1990s. The transaction costs, when affordable, could not support the system
or meet business objectives. The costs needed to be borne by a larger market.
RHIOs were the first effort to start
getting notice, and support, by the federal government. Because they offered
services across a wider area, many linking communities together, they spread
the risk. Nevertheless, they took millions to start and millions more to keep
operating—difficult to raise and sustain. Competitive pressures between
hospital systems kept the bar of mistrust high and stymied many efforts at data
collaboration. Again, the issue of who controls the data tended to limit access
and therefore success of the exchanges. Finally, the fear of legal liability
from unlawful disclosure added another chilling effect.
The above initiatives were focused on
community and regional collaboration. Why not reverse the direction and focus
on the patient? A big boost to the idea of personal health records as the
lingua franca of health information exchange was started by the Markle and
Robert Woods Johnson foundations in the mid-2000s. (I attended the first couple of meetings they had and felt some of the enthusiasm.) The idea was to empower
patients to have their own “personal health record” that contained all
information relating to their healthcare. Generally, these efforts were started
by individuals who were patients with serious chronic conditions, their
family members who needed to care for someone, or they were started by behemoths
like Microsoft or Google. The legal issues were potentially eliminated because
the patient controls their own data in the first-person, but the approach would
not provide societal benefits of aggregating the data for improving clinical
outcomes or reducing costs. Finally, there were the persistent technical and
logistical issues of providers tapping into the PHRs.
HIEs attempt (through the HITECH Act and
Meaningful Use) to provide a set of incentives and penalties for non-compliance
in adopting a standards-base EHR as well as strike a balance between personal
information security and community information use. Some have called this a
utility model similar to past regulated monopolies in electrical power and
telephony.
I'll explore the path traveled so far in a future post.
No comments:
Post a Comment