Data Independence is Up to Patients Now

For patients to get the medical data they deserve in a way the HIPAA Omnibus law says they deserve it, they need to demand that providers cut the red tape. Whether they will do so remains to be seen.

When former national coordinator of healthcare IT, Farzad Mostashari MD, stood on stage at the annual HIMSS conference in April and called for a national day of action on July 4 for patients to request their medical records, headlines followed.

But now that the headlines have died down, and the date is approaching, I wonder just how big a day it will turn out to be.

Russ Branzell, president and CEO of CHIME, expressed sympathy about patients' difficulty in obtaining their records. But CHIME still supports the gutting of Meaningful Use requirements that providers prove actual patient viewing/downloading/transmitting of their data, a decision now in ONC's hands.

"When you have it all fragmented, in multiple records without a complete record, it actually can be of little value and actually be more dangerous without having all of it combined, which is the journey we're on," Branzell told me back in April.

Even now, the national day of action isn't much to look at in the way of an organized or sponsored initiative. It is supposed to take place on July 4, but if you go looking for it on the Web, mostly it converges around some blog posts, videos, and a Twitter hashtag, #dataindependenceday.

While my sympathy lies squarely in the camp of patients getting the data they deserve in a way the HIPAA Omnibus law says they deserve, I am not certain that things will be much different on July 5.

An HIE of One

When I spoke with him last week, Mostashari downplayed what a single day of action could yield.

"There is no legitimate business policy, practice, privacy—nothing—there is no legal basis for standing in the way of that what we call an HIE of one. And the individual is the one who can break any information blockage, but they have to ask," Mostashari told me.

"That is what the day of action is, or really it's going to end up being, I think, the launch of a yearlong campaign. [It will] make it easy for people to ask and to document their experience, [and] to bear witness to what happens when you do ask. Let's fix it, and make it easy so that people can be the ones to break through the information blockage."

After five years of pushing patient engagement policy down to providers, what Mostashari refers to as "pushing rope," he admits that providers now "meet the requirements enough to get the check… but until there's a pull on the rope, it's knotted."

At too many health systems, he says, numerous barriers still exist to getting patients their health records. That's despite the fact that technically, the EHR software that providers were paid Meaningful Use incentive dollars to deploy are technically capable of serving up such data via a patient portal. Too many providers still say "you have to come down to our basement," he says. "You have to sign the form in person. You'll get [your] paper 60 days later and you have to pay $400 for it."

If enough patients asked for information in this hard-to-use and hard-to-afford form, providers would have to think differently. That's what the #dataindependenceday is supposed to be all about. "The best case is that a sharp tug on that rope can start the flywheel spinning that makes it easy for more people to ask," Mostashari says.

He says the worst outcome of the campaign could be "If this is still seen as some sort of compliance task, if we still have a culture in medicine that views patient engagement in their health as largely a nuisance."

Patient Data Hard to Gather

When I spoke at length with Branzell at HIMSS, he presented a detailed analogy about how every provider in the U.S. was on a journey to assembling a full longitudinal record on every patient, but that each provider was taking a different path toward that full record. And we are now at a point in the journey where patient data is actually harder to gather than ever before, because providers are pursuing radically divergent interoperability solutions, at least so far, to deliver that longitudinal record to the patient in one location.

I can see Branzell's point. We have $30 billion of EHR software that ostensibly meets a set of common criteria. But in practicality, what it means to a patient with several comorbidities is that getting his entire record means visiting maybe half a dozen patient portals, each of which contains a slice of his data. I can see why CHIME and others view the burden of providing and supporting these portals as busywork without much upside.

And yet, Mostashari points out that many providers have successfully implemented patient portals and easily met the Meaningful Use Stage 2 criteria of 5% of patients viewing, downloading, or transmitting a medical record or discharge report.

Technically, it can be done, and with the software that those providers were reimbursed by the government to purchase. And not every patient requires the entire longitudinal record to get value out of that download.

What it comes down to is, are the current patient engagement requirements good enough, and is Branzell's preferred ideal longitudinal record a form of perfect that patients should not have to wait for? Is perfect the enemy of the good?

Business Practices are a Barrier

The answer may lie in looking beyond the current patient engagement debate, to what Mostashari is now doing, instead of running ONC. He is co-founder and CEO of a 2014 Washington D.C. startup, Aledade, which provides software and services to help medical practices with ACOs and population health in a Medicare shared savings context. At the heart of Aledade's success is whether the very interoperability Mostashari pushed into Meaningful Use is itself successful for not.

"If [patient record] exchange does occur, you have a much better chance than you did five years ago, actually being able to do something with that data," he says. "We also have now universal protocols for how to essentially replace the fax machine, and securely push information from provider to provider. And we've seen some increase in the actual exchange of information.

"What's holding it back now are the business practices, and frankly the financial incentives, [for] healthcare providers, health systems, and EHR vendors, for either enabling or blocking the flow of that information."

Early practices using Aledade have increased the rate of wellness visits by 500% "within a matter of months," Mostashari says. "We increased fivefold the number of vaccinations."

If those practices' patients don't get as sick later, the savings ACOs are supposed to produce will be realized. That sounds like progress—good, if not perfect—progress.

Mostashari believes patient engagement is essential to the success of ACOs, a point I've been making with some regularity. Whether patients show the same passion for engagement, in numbers big enough to make providers pay attention, remains to be seen.