At the National Committee on Vital and Health Statistics executive subcommittee hearing on “meaningful use” of health information technology, Carolyn Clancy, director of the Agency for Healthcare Research and Quality testified “We haven’t reached a system-based approach where the right thing to do is the easy thing to do.” The meaningful use of health information technology will free patients to organize to accelerate research and deliver advice independent of any particular doctor orhealth plan. Data mining opportunities traditionally restricted to doctors and health plans as a side-effect of their essential services will now be available to anyone that gains the trust of a patient-consumer including, for example, not-for-profits and Internet social networking groups.
Suggesting or confirming “the right thing to do” involves coordinating disparate information that includes mining patient data for decision support (to search and display guidelines), for comparative effectiveness research (to find and group similar cases), for bio-surveillance (to find cases that match a profile) and for informed consent (to quantify the risks of alternative treatments). The result of data mining is useful to the doctor, the patient and the investigator.
As with other things, the American Recovery and Reinvestment Act (ARRA) leaves much of the rulemaking and guidance regarding data mining to interpretation by the Secretary of Health and Human Services. To add to the uncertainty, at the recent Health 2.0 conference I learned from Ann Waldo, Esq. that health records not covered by ARRA are nonetheless covered by consumer protection laws. The law addresses the problem of inappropriate solicitation or misleading advice as a matter of privacy, consent, disclosure, role, identity (anonymity), transparency and accountability. I’m not enough of an amateur lawyer to dive into the details.
There is great value in access to a comprehensive Patient Controlled HealthRecord (PCHR) for second opinion, treatment, pay-for-performance, research and pharmaceutical marketing. Expect doctors, advocacy groups and other trusted entities to compete for the privilege of hosting and/or accessing the PCHR with patient consent.
So where do the cats and dogs come in? Doctors and health plans (the cats) provide necessary medical services to a more-or-less captive consumer and their activities are regulated by HIPAA, ARRA and institutional review boards (IRB) accordingly. Doctors and health plans are paid for services other than health records management (and it should not be surprising that they have traditionally done such a poor job of health records management).
The business models for patient controlled health record hosts, public registries, social networks and advocacy groups (the dogs) are all about health records management. As Deven McGraw JD, MPH of the Center for Democracy & Technology argues on the e-Care Management blog, these institutions and groups should not be subject to the same regulations as the covered entities. This will help provide maximum value to the consumer.
The Innovator’s Prescription traces the inefficiency of today’s medical practices to mixed business models. Tethered, incomplete and ineffective (in the sense that they are inadequate for catching medical errors and seeking second-opinions) “personal health records” are evidence of this problem.
As ARRA eliminates the treatment exemption loophole in HIPAA while forcing the covered entities to put complete health records online, patient controlled health records hosts will compete for the right to mine and extract value on behalf of the consumer under ARRA and consumer protection laws. As with music, gambling and banking, regulations and services that do not take into account the consumer’s definition of meaningful use of the Internet will likely be bypassed or ignored by an empowered and impatient consumer. Competition to win the consumer’s trust, gain their attention, and mine their data is about to heat up.
Adrian Gropper, MD is a founder of MedCommons, with roots in patient-controlled and patient-centered health records that go back to MIT’s Guardian Angel project. AMICAS, a more recent radiology-focused venture, pioneered the clinical use of Web browsers and protocols. Adrian is driven by the vision of doctors and patients collaborating around shared health records on the Web.