By Edgar Wilson, Independent Analytical Consultant
Discussions of the benefits, potential, and future of Electronic Health Records (EHRs) trumpet the advance of personalized healthcare built on the intersection of patient history and genetic data. President Obama has advanced a program to integrate genomics data into both research and treatment, known as the Precision Medicine Initiative.
In the meantime, providers and clinicians continue to grumble about when and to what extent records of care should be proprietary and private—even from the patients they concern—while red tape in the form of fees surrounding the exchange and access of medical records continues to hamstring interoperability, regardless of the technical issues interrupting record-sharing.
Why are we blustering about patient-ownership and personalized medicine when our EHRs often don’t even integrate advance directives (ADs), much less smoothly share them among providers?
Even more than treatment records and physician comments, ADs are critical to providing patients the care they both want and need. ADs effectively spell out, in legal terms, the individual patient’s thoughts and expectations on balancing survival against quality of life—a critical distinction in an age of ever-advancing technology and capacity for prolonging life artificially. And considering that life-extending technology can carry a hefty price tag, patient interests and limits can have tangible as well as philosophical import.
ADs are being assisted by apps, social initiatives, and even the broad aging of the population requiring chronic care and disease-management, as the reality of mortality increasingly informs treatment. ADs protect both patient interests and providers, yet another contentious issue in a litigation-prone era. As such, addressing advance care expectations is not just an awkwardly morbid conversation—it is a natural, necessary component of the patient-provider relationship.
So why the short shrift of ADs in Meaningful Use and the interoperability push?
Aside from notions of integrating Big Data techniques into medical research, care delivery, and record-keeping, one of the leading promises of EHRs has been increasing patient engagement. This is critical in any model of healthcare: prevention starts with patients informed and engaged in their personal well-being; sharing records with patients increases insight into their providers’ approaches to treatment, and in theory, improves patient ownership of their consumption of clinical services; transferability of records allows patients to shop for preferred providers more painlessly, whether looking for the right specialist or simply being selective about their general practitioners in order to build a positive, long-term relationship with physicians.
Having a conversation about advance care planning certainly fits within the broad goal of patient engagement.
Advance Directives belong at the center of EHR systems and the pursuit of interoperability—not as an afterthought. The effective, streamlined integration of ADs into digital records should be the benchmark for evaluating EHR systems, both in terms of their function and connectivity.
This, more than any other pie in the sky promise of what the future of healthcare could be with EHRs, should be driving the conversations among providers, patients, and developers.