I recently offered testimony to the Consumer Empowerment Committee of the American Health Information Community (AHIC), a public-private partnership set up by HHS Secretary Michael Leavitt to foster EHR and PHR development. In my testimony I advocated for the AHIC to create a priority subcommittee to develop a PHR for persons with disabilities, which it decided to do.
Generally in behavioral healthcare, our attention has been focused almost exclusively on creating EMRs, paying little attention to PHRs. Yet PHRs for persons with disabilities are the proverbial “canary in the coal mine.” If we cannot get PHRs to work well for this population, then much less hope will exist for effective use of PHRs by other groups. After all, to a greater extent than for almost any other group, persons with disabilities have both high motivation and high need for PHRs. Such persons must attend to health status issues virtually every day. They also have great interest in the quality of their healthcare. In Institute of Medicine terminology, they determine the “true north” of the healthcare system.
For PHRs to be most useful, such monitoring must be done in real time. Consumers need to be able to compare their health status today with what it was yesterday. They need real-time information to engage in effective self-help. Because disabilities can limit physical mobility, consumers need a convenient online tool for scheduling provider appointments and for monitoring the results of recent visits. Finally, they need online support groups to communicate with on a frequent, perhaps daily, basis.
A clear business case can be made for a PHR for persons with disabilities. The cost of healthcare for persons with chronic illnesses is well in excess of $1.5 trillion per year in the United States. For mental healthcare, approximately 80% of all resources are spent on persons with long-term mental illnesses. If one makes the very conservative assumption that effective use of PHRs by persons with disabilities would decrease the annual cost of chronic care by only 5%, this would result in an annual dividend of more than $75 billion. At even half that return, PHRs for persons with disabilities would be a very good investment.
Some important caveats do exist, however. First, PHRs for persons with disabilities cannot work well if they are fragmented into a set of different PHRs, each tethered to specific insurance plans, providers, pharmacies, etc.—the situation confronting us now. A PHR must contain information integrated across all of these different information sources, which the AHIC recognized in its final recommendations.
Second, a PHR must be actionable. No matter where the person is, the information must be accessible and current. This means that the person must be able to carry a “smart card” containing the PHR information, very much like how allergy bracelets are used. Simultaneously, the same current information must be available in a data warehouse or through a distributed system of information.
Clearly, a PHR for persons with disabilities would have major implications for those who use behavioral healthcare services. A PHR would help to overcome the current fragmentation among mental health, substance use, and primary care services. It also would promote our national vision of a recovery-oriented, consumer- and family-directed system, since self-help and personal direction of care would be emphasized.
As a result, it will be very important for consumers, family members, providers, and system managers to offer input into the PHR development process when requested by the AHIC (I will report on progress in a future commentary). All meetings of AHIC committees are open to the public, and all include a public comment period. Hence, your input may be as simple as making comments during the public comment period of a subcommittee meeting.
Dr. Manderscheid is Director of Mental Health and Substance Use Programs at the consulting firm SRA International, Inc., as well as a member of Behavioral Healthcare's Editorial Board.
To contact Dr. Manderscheid, e-mail firstname.lastname@example.org.
Behavioral Healthcare 2008 August;28(8):25