Welcome to the contrast between an electronic health record (EHR) and a registry. The EHR is configured to help the user manage the patient’s dedicated file. In a registry, the user is interested in managing all the patients meeting predefined criteria. The former is all about individuals while the latter is all about populations. Just because your PC’s operating system enables you to handle that single item open your desk top doesn’t necessarily mean you’ll be able to get a detailed snapshot of a piece of your hard drive containing all the files of interest.
Which is, until you think about it, very counterintuitive, especially to us clinicians. You’d think that in this era of terabytes, servers, and Googling, it shouldn’t be so hard to find out how many patients with chronic hepatitis C infection who live in Illinois and have Blue Cross Blue Shield insurance and received peginterferon between the ages of 45 and 55 years had a relapse of their disease within one year. You'd think that using that informaion to assess the quality of care among physicians and hospitals should be a few clicks away. Alas, just like your PC's operating system, it ain’t so easy.
But it is not impossible. Which is why anyone interested in learning more about the topic should check out the article by Lisa Buckus et al in an August 28 Journal of the American Medical Informatics Association (JAMIA) ‘PrePrint’ titled ‘Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management.’ It describes the implementation of theVeteran Administration’s (VA) Clinical Case Registries (CCR) that was developed to stand alongside its much admired VistA EHR.
This is not easy. The software took five years and it’s still being expanded, not only because new data bases are being added but because VistA is also evolving. A change in VistA means a change in CCR.
The description of CCR involved a jargony informaticisms, but to the DMCB it seems that the CCR “crawls’ the VistA system much like Google web crawler bots.
CCR is updated nationally every 24 hours. There are tens of thousands of patient records.
Big emphasis on privacy.
While CCR reports and makes research possible on a national basis, it also enables local users to extract local registry information. ‘Canned’ reports are available but users have the ability to customize. They’re being exploited: over 2000 local reports are generated each month.
National level summary reports – good or bad – will be available on the internet.
While the identification of candidate patients for placement in the various registries by automated programming has high sensitivity and specificity, a live and specially trained person at 128 VA facilities is necessary to manually review and confirm some patients’ information prior to inclusion in any registry.
Positive or negative labs that determine the presence or absence of a disease state is read off a free text field, not via any direct data interfaces. The DMCB has heard that this is not usual: clinical laboratories are not formatting their data in ways that can be used at a population-based level. It suspects the same is true for imaging studies, like echocardiography, cardiac catheterizations and CAT/MRI scans.
A telling anecdote: a new drug-drug interaction was announced by the FDA and the VA was able to use CCR to quickly identify the patients at risk.
The DMCB rates this as a must read. So much of what we as a nation want to do in assessment of quality, cost effectiveness, comparative effectiveness research, leveraging information technology will be dependent on the creation of useful registries. The lessons from the VA in this article are important for physicians, policy makers and anyone interested in population-based health improvement.