Whose Patient Record Is It, Anyway? Speak Up Now

By Peggy Salvatore

The U.S. Senate Health, Education, Labor and Pensions Committee’s hearing last week on the electronic health records trained its sights on interoperability of EHR systems, or lack thereof. And the Senate, like much of the rest of the medical world, wondered out loud whether we’re getting our money’s worth .

If you are wondering the same thing, this is a great time to speak up. After all, the government has plowed billions of dollars into implementing electronic patient record systems over the last five years that still don’t capture all relevant patient information or even talk to each other.

HHS put out a Notice of Proposed Rule Making (NPRM) for Meaningful Use Stage 3 on March 20. Anyone with an interest in the issue can submit comments to HHS. Your comments are considered before the final rules are written. This is an opportunity for patient and provider advocates to pull together a team and submit a detailed comment. Responding to proposed Federal Regulations can be tedious, but I recommend it as an exercise for interested parties. The comment deadline is May 29 at 5 p.m.

If you want to start right now, here is the link to all 301 pages.

Why Patients and Providers Need to Respond

Large stakeholders like software vendor Epic and hospital systems like Kaiser will submit detailed comments. Their voices will be heard and their interests protected. The regulations will be written to preserve the status quo.

Patients and providers who are affected daily by these decisions need to be represented as strongly. After all, what good is it to a patient retiree whose main residence is in DesMoines if the hospital where they vacation in Florida can’t see their records? Imagine if that same person put their money in a bank in DesMoines and couldn’t retrieve it at an ATM in Fort Lauderdale.  The bank that couldn’t play nicely with the other banks wouldn’t be in business too long. Customers wouldn’t stand for it.

At some point, all the Senate hearings, Interoperability Roadmaps and Meaningful Use penalties don’t amount to a hill of beans if the electronic patient record system doesn’t catalog all the patients critical data, make it available at any possible point of use and keep it secure enough that patients feel free to hold all their personal, confidential health information online.

Having watched this debate since 1998, it baffles me that the same issues, debates and problems keep circling around this system, only the names change.  The same huge gaps remain in the system, interoperability seems to be a pipe dream and the security of patient data is the smoke wafting from the pipe. Meanwhile, I can download an app on my phone that takes a picture of my rash and sends it in a HIPAA-compliant fashion to my electronic record. My phone couldn’t even take a picture in 1998. The market for using technology to advance human health is surging ahead leaving the feds in the dust.

Remind Me, What is the Goal?

The promise is universal access to full patient data to better serve the patient and reduce the cost treatment due to pricey duplication and error. The reality is a tug of war among competing interests including proprietary software and government control. The most important interest groups in this discussion, the patients themselves and the providers who care for them,  have squeaky little voices.

Admittedly, Meaningful Use can be a somewhat arcane discussion as much of it revolves around software and hardware standards that facilitate interoperability and ensure data security.  Even if discussions around electronic patient data make your eyes glaze over, the substance of what is at stake is as sexy as the latest season of Grey’s Anatomy.

The motivation for getting patient data online is strongest when the interest groups with the most to gain or lose are the focus of the effort. Those groups are patients whose health is at stake and the individual providers who care for them.

As long as the loudest interest groups at the table are big software companies whose stock hangs in the balance and government entities that can make revenue by taxing and penalizing large health systems, the real motive for getting to goal is too far removed from the vision to ever achieve success.

Here  are some early stakeholder reactions to the Meaningful Use rules.