The deadline for comments to Stage 2 is upon us and a clear fork has emerged for federal regulators. The cats and dogs here are institutional vs. patient engagement. The institutional fork has been taken by the American Hospital Association. The patient fork is exemplified by the National Partnership for Women and Families. The primary argument is over patient access to their own information. The draft regulation suggests a 36 hour (or 4 days in other circumstances) delay. The AHA wants 30 days. Some patient advocates are seeking immediate and highly convenient access.
The fork in the road for federal regulators, with some $30 Billion dollars of incentives in hand, is whether to micromanage the institutions or to encourage patient-centered innovation. This choice is deeply entangled in the $Trillion realities of payment reform.
The micromanagement of institutions through increasingly complex regulations on EHR vendors, clerical and clinical staff seems like slow torture. We have institutions begging for relief. Large vendors are consolidating their lock-in business model as the barriers to entry into the health information market get higher and higher. Quality transparency is controversial and price transparency is almost unimaginable.
Patient engagement is the alternative to federal micromanagement and essential to building trust as we accelerate payment reform.
Stage 2 Meaningful Use is an opportunity to change the landscape for health reform by truly putting the patient, rather than the institution, at the center of truth. The elements are mostly there in the draft and associated proposals: Secure, bi-directional, email-simple messaging using the Direct protocols (the patient, by design, is a first-class citizen in Direct); useful, standardized data in Direct messages such as BlueButton, CCDA and DICOM files; links to diagnostic-quality imaging in EHR portals and Direct messages; lab-direct patient access to test results.
The essential requirement for patient engagement is to enable connectivity across institutions, family, caregivers and a host of web services explicitly designed to serve patients. Even as payment reform promotes islands of cooperation called Accountable Care Organizations patients have to be given a fair shot at their own information to detect errors, explain bills, get second opinions, shop for price and independently assess quality. We cannot expect patients to do all of this for themselves.
The ability to delegate access to their own information is critical to patient engagement. An EHR web portal without Open Authorization (OAuth) is a patient-engagement dead end. It requires the patient to copy and paste information from one portal to another. BlueButton downloads make the process easier and a lot more reliable but still require the patient to manually download and upload files. As the Markle Foundation concluded in defining the BlueButton guidelines, the patient needs a way to authorize one web portal working on their behalf to automatically access another portal working on their behalf. Once the link is made by the patient, the two portals can communicate directly within the restrictions set by the patient. The technology itself is simple, secure and ubiquitous across the major consumer-facing services on the Internet. OAuth has already been formally recommended to the federal standards committee.
The Stage 2 regulations are an opportunity to drive health reform by empowering and engaging the patient through data transparency. Doctors will need to find their own way through health and payment reform. Micromanaging health records will get in their way and continue the slow torture at the hands of both regulators and vendors. It’s time to give patients immediate access to their own data in a way that enables access by the institutions, advocates and web services of their choice.
Adrian Gropper, MD is a founder of MedCommons and consulting on health services strategy at HealthURL.com. He is driven by the vision of doctors and patients collaborating around shared health records on the Web.