A successful nationwide system of electronic health records must address three key issues: (1) privacy; (2) stakeholder participation; and (3) financial sustainability.
The current provider-centric approach, involving providers sharing patient data with each other through health information exchanges, results in operational complexity, slow response times, high administrative costs and security vulnerabilities. In contrast, a patient-centric approach, built on health record banks (HRBs), can successfully resolve these issues by giving patients control over their privacy, ensuring stakeholder participation, and offering more opportunities to generate self-sustaining revenue.
At HIMSS12 later this month, the Health Record Banking Alliance will convene the inaugural meeting of its National Advisory Board, a group of nationally and internationally recognized experts in health informatics, privacy, health policy, health care, patient advocacy, health education and business. They will be discussing strategies to promote and accelerate development and adoption of HRBs - community-based personally controlled repositories of electronic health records. HRBs can provide effective and efficient health information infrastructure (HII) in communities by simultaneously addressing the interdependent requirements of privacy, stakeholder participation and financial sustainability.
Privacy requires assurance to consumers that their health information is being accessed appropriately and protected from misuse and unwanted disclosure. The only privacy policy for personal health data that is inherently acceptable to everyone is for each person to establish and enforce their own customized privacy policy by controlling a copy of all their information. If data only resides in silos across multiple organizations, patients would need to connect to each source of their information to indicate their access permissions - a burdensome and unwieldy task. In contrast, an HRB allows patients to readily and conveniently manage their access permissions in one place. In addition to being an effective approach to privacy, patient control also ensures that stakeholders make information available.
Stakeholder participation is a consistently vexing problem for HII developers. Since healthcare providers are marketplace competitors, they have very serious concerns about the potentially negative consequences of sharing their information with each other. Also, healthcare institutions want to control the dissemination of patient information even after its release, adding huge legal and technical complexity to the infrastructure. However, if patients request their own information, then all stakeholders must provide it (in electronic form, if available) under the HIPAA Privacy Rule (45 CFR 164.524(c)(2)). Utilizing consumer-mediated information ensures that all stakeholders will transmit patient data to the HRB.
With respect to financial sustainability, HRBs have both cost and revenue advantages. The inherently lower complexity of HRBs results in lower operating costs. This, combined with the additional revenue possible from searching records (with consumer permission) and other potential services, allows HRBs to be funded solely through new value created for consumers and other stakeholders, avoiding the need for either public subsidies or capturing any portion of healthcare savings. For example, the HRB approach allows the delivery of timely and accurate reminders and alerts to patients for recommended preventive services, medication refills, and other medically related events of immediate interest to patients and their families. It also enables applications that assist medical researchers. An HRB provides the efficient mechanisms for both searching data and recording and maintaining patient consent that are necessary for such applications, but have not generally been incorporated into HII systems. Utilizing new value creation to finance HII avoids the prediction and allocation problems inherent in attempts to leverage expected healthcare cost savings, with the added benefit that these substantial savings fully accrue to whomever achieves them.
The HRBA National Advisory Board members are Dave Bennett, senior vice president of Integration, NantWorks, LLC; James T. Canedy, MD, president, simplywell.com; Ann Cavoukian, PhD, Information and Privacy Commissioner, Ontario, Canada; Dave deBronkart (“e-patient Dave”), nationally known patient advocate and author; Edmund Haislmeier, senior research fellow in Health Policy Studies, Heritage Foundation; John Hoff, Esq., former HHS Deputy Assistant Secretary for Disability and Long-Term Care; David Kendall, senior fellow for Health and Fiscal Policy, Third Way; William J. Mangold, Jr., MD, JD, regional medical director (Southwest), Medicare; Dave Roberts, vice president, Government Relations, HIMSS; Fran Roberts, PhD, RN, group vice president for Healthcare Alliances, DeVry Inc.; Edward Shortliffe, MD, PhD, president and CEO, American Medical Informatics Association; Latanya Sweeney, PhD, visiting professor, Computer Science, Harvard University; and Peter Szolovits, PhD, professor, Computer Science, MIT.
William Yasnoff, MD, PhD, FACMI, is a health IT consultant for National Health Information Infrastructure (NHII) Advisors and president of the Health Record Banking Alliance. His prior work at HHS resulted in the creation of ONC in 2004. He is the author of the Health Information Infrastructure chapter in the textbook Biomedical Informatics (Shortliffe & Cimino, eds.).
