Activating a full architectural model: improving health through robust population health records

In the current issue of JAMIA, Friedman and Parrish have crafted an insightful and provocative call for the Population Health Record writ large. This paper contributes in an important way to the literature and appears at a propitious time in our nation’s health policy history. Furthermore, it is appropriate for JAMIA in that the AMIA Board first called for such a development in 1997. The authors present a compelling case, with sufficient details to make clear exactly what is needed. I will therefore not seek to elaborate upon the paper ’s content except to say that I support it wholeheartedly. Rather, I offer some added thoughts related to overcoming critical policy barriers. My comments will deal with understanding our civilization culturally, and touch on the role and importance that health can yet play in our nation’s priorities. Before engaging in these weighty matters, I note that the reason that it took 13 years for this proposal to be so ‘timely’ now has both technical and governmental components. The long delay in addressing the population health recorddthe final one-third of the data architecture that encompasses patient, personal, and population recordsdrelates to the state of information and communications technology at the time that AMIA initially called for PopER. Bill Wolf, until recently President of the National Academy of Engineering, reminds us that even the Apollo moon missions in 1969 only had as much computer ‘memory’ to work with as one can nowbuy in an ordinary greeting card to sing ‘Happy Birthday ’ to you. While our minds might have been willing to dream of crunching gigabytes of data on populations in 1997, most of us were at the time forced to live and work in megabytes, still using 3 1/2 inch ‘floppy’ disks. Electronic health records (EHRs) were largely hospital-based clinical records. Personal health records were just a gleam in a few people’s eyes. On the policy side, it was at that time that the Department of Health and Human Services under Secretary Donna Shalala decided that the government needed advice not only on vital statistics but on all aspects of health information policy. This led to a reformulation of the mission and goals of the National Committee on Vital and Health Statistics, the creation of a National Health Information Infrastructure Working Group, and the ultimate release of two relevant policy documents on National Health Information Infrastructure. 4 While both documents mention population health records, the vision for the population health record as proposed by Friedman and Parrish mostly resembled the old saw about unicorns. ‘Yeah, I’ve heard of them but I haven’t seen one’. Now over a decade later, the US is into our third or fourth National Coordinator for Health IT, depending on how one chooses to count; the country is about to spend billions of dollars on electronic health records and information exchanges to achieve meaningful use; and, regulators and care providers now prepare for a second iteration of the Health Insurance Portability and Accountability Act (HIPAA) that was included in the Health Information Technology for Economic and Clinical Health (HITECH) provisions of the American Recovery and Reinvestment Act of 2009. For both better and worse, the bulk of policy attention has circulated far more heavily around protection of personal health data as opposed to responsible ways to share it for improving health and healthcare through EHRsdwhether or not the data contains a patient, personal, or population focus. Two additional momentous policy developments now part of the picture potentially bode well for Friedman and Parrish’s vision. The Patient Protection and Affordable Care Act of 2010 guarantees citizens lifetime access to health insurance; this development removes the risk and the fear associated with it that inappropriate access to personal health data will render a citizen forever uninsurable. With this historic law plus the added safeguards for person specific health data included in the American Recovery and Reinvestment Act (ARRA) law, including stiffer penalties for those who willfully ignore these mandates, the nation can now call for better evidence of what works in healthcare and how well it works compared to other treatments based upon data derived from electronic health records. And, it has done just this with ‘comparative effectiveness’ in ARRA. The Secretary of Health and Human Services, Kathleen Sebelius, stated that she hopes to make evidencebased decisions based upon data and research. All these recent policy developments offer potential hope and support for the population health record. With the US now having the policy infrastructure for security and privacy that it needs, including a privacy officer within the Office of the National Coordinator, data management and exchange mechanisms can consider greater and more trustworthy data sharing for those citizens who are open to sharing their data. The question is whether or not we will press to balance all the current protections of data by facilitating access to data as proposed in the UK with its 2007 Research Capability Program in the Department of Health. Twenty-one NHS data-sets will become available to approved researchers with ‘safe havens’ for Department of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USA