Electronic health record systems (EHRs). Interoperable electronic health record systems (EHRs) allow local clinicians to exchange information about shared patients at the point of care (Halamka, et al., 2005). Equipped with interoperable EHRs, primary-care providers could effectively coordinate care for adults with chronic conditions, such as cancer, who account for 75% of all U.S. healthcare expenditures (Anderson & Knickman, 2001; Anderson, Frogner, Johns, & Reinhardt, 2006), helping to close the quality chasm in U.S. health care (Kohn, Corrigan, & Donaldson, 1999; IOM, 2001, 2003). Appointed as the first National Coordinator of Health Information Technology by presidential mandate (Bush, 2004), Dr. David Brailer envisioned that healthcare providers would employ interoperable EHRs to exchange most Americans’ information across a Nationwide Health Information Network (NHIN) of local health information exchanges (HIEs) (Brailer, 2005). The NHIN’s success will require a five-fold increase in use of interoperable EHRs from 2005 baseline rates: 15–20 percent of U.S. physicians’ offices and 20–25 percent of hospitals (Hillestad et al., 2005). The estimated cost to the federal government for limited provider adoption of interoperable EHRs adoption is $156 billion (Kaushal et al., 2005). No estimate is available for continuing operational costs of local HIEs. However, a profitable business model for HIEs has yet to be identified (Brailer, 2007).

Personal health record systems (PHRs). A national consensus conference recommended action steps necessary for NHIN achievement (Yasnoff et al., 2004) including: (1) creation of the personal health record (PHR), for personal access to NHIN information; (2) development of tools to increase PHR usefulness; and (3) evaluation of PHR usefulness. Hammond (2005) argued that health data standards are the key to creation of consumer-centered PHRs that aggregate data from many providers’ EHRs. Tang and Lansky (2005) proposed that PHRs would allow patients and providers to develop new ways of collaborating given optimal characteristics: lifelong and comprehensive; accessible from any place at any time; provides health management tools; private and secure. And, they classified 3 PHRs types: (1) tethered to a provider’s EHR; (2) freestanding software such as a USB key; and, (3) what they call the holy grail—and what we call an unbound PHR that allows patients to capture information from every healthcare source, enter their own information, share information with providers, and fully control the use of PHR contents. Tang et al. (2006) favor PHRs which are more than just static repositories for patient data, which combine data, knowledge, and software tools allowing consumers to become active participants in their own care. Halamka, Mandi, and Tang (2008) described early implementation of two provider-controlled, tethered PHRs and one consumer-controlled open-source PHR directed at corporate employees and identified future requirements for a PHR that: “works with all sites of patient care” and “supports electronic data input from outside institutions.”

Recommended citation:

Blechman, E.A. (2008). Unbound PHRs for Cancer Survivor Care Planning, Coordination, & Self-Monitoring. Unpublished manuscript, U. of Colorado-Boulder.