Late last month, the US government published the final rules regarding the second stage of Meaningful Use. The rules call for increased interoperability of health information, the adoption of standardized data formats and other measures intended to push the healthcare system towards electronic records. These rules, however, miss a key point about achieving truly integrated care and making effective use of digital patient data – patient control. The only way to effectively move patient data safely through the healthcare ecosystem is through patients as owners and custodians of their medical record. But first, a bit of background.
A part of the 2009 American Recovery and Re-investment Act, the Health Information Technology for Economic and Clinical Health (HITECH) Act was created to cajole the US healthcare system to adopt Electronic Health Record systems (EHRs) in a meaningful way. Meaningful Use is defined as a list of objectives, for example:
- Maintain Active Medication Allergy List
- Implement five clinical decision support rules relevant to specialty or high clinical priority, including for diagnostic test ordering, along with the ability to track compliance with those rules
and many more.
While there are quite a few objectives, the incentive program itself is divided into three stages. Stage 1 focuses on data capture and sharing. Stage 2 concerns more advanced clinical processes and stage 3 hopes to build on the first two stages to improve outcomes (some describe this as the holy grail of health reform). Some of these rules have taken a stab at increasing patient engagement.
However, while the program takes some initial steps towards addressing patient engagement, it misses the larger point, which is patient control. It specifies, for example, that providers must offer patients the ability to “view online, download and transmit” their health information. Specifically, it requires that 50% of all unique patients are given this ability and that 5% actually use it (a downward revision from the previous 10%).
While noble, this objective is a bit misguided because it vastly overestimates the ability of EHRs to actually engage patients. Since EHRs are optimized for clinicians to work together inside a particular institution, the best they can do for the patient is provide a small window into that institution alone, the patient portal. Patients quickly catch on that their record doesn’t connect with their other care settings and give up on the portal, especially when they start to catch errors and have no option to fix them. The Centers for Medicare and Medicaid Services, which is publishing these rules, is trying to get competing EHRs to work together and to share data with patients. This approach is an uphill battle. We know from independent reports patient control is the best way to provide patient record access.
It’s worth noting that The HITECH stimulus has echoes of a UK analog, the National Program for IT, which failed quite spectacularly. While there are differences – the US version is much less top-down and is focused more around incentives to private industry – the shared theme is a belief that healthcare reform can work without fundamentally empowering the system’s key constituent – the patient. The patients themselves are the key to meaningful use of electronic records. We ignore them at our own peril.