AMDIS 2014: Patient engagement and the future of HIE

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OJAI, CALIF.--Are patient engagement efforts the solution to health information exchange (HIE) efforts that are just becoming too complex? That‘s one question panelists looked at during a session on patient engagement and HIE last week at the AMDIS Physician-Computer Connection Symposium.

“The major assumption behind all of this is that combining all the records of the patient gets you to the truth,” observed Joseph Schneider, MD, vice president, CMIO, and medical director of clinical informatics for the Baylor Health Care System. “And that is not true.”

In fact, Schneider said, when it comes to HIE, patient disclosures could cause a patient some concern if they were a little bit more truthful.

According to Schneider, a more accurate disclosure might read: “We are going to manage your data, but there a is a good chance your data from different doctors is going to be conflicting. Your data may be too overwhelming for your doctor to use.  Your consents may be conflicting or impossible to follow, your data may be mixed with someone else or we won’t be able to match you with your data, your data may be lost or stolen, your data may be destroyed sooner than you want, and your doctor may not join an HIE because of liability issues. But trust us anyway.”

Patients may trust that the information that goes into an exchange will help doctors get to the truth, but what happens if there is conflicting information in the record?  For example, if a patient in Boston tells a physician he has an allergy that information will go into an EMR and then into a national network. But if that same patient goes to a doctor in Texas who tests that patient for allergies and concludes that patient has no allergies, that information also goes into a network.

So what happens, asked Schneider, when that patient ends up in Denver unconscious, and the record shows he is both allergic and non-allergic? “It’s a simple example,” he said. “But it exists for many other patient-level data type points—name changes, data, insurance.” And while it’s easy to suggest that the doctor in Boston should just go back and fix the record, “that’s never going to happen,” Schneider said.

With this in mind, Schneider asked whether it might be time to consider some new approaches. “We’ve talked about patient engagement for the longest time, it’s now time to fund it,” he said. “Let give [patients] the message that they are responsible for their data. Let’s give patients and physicians the tools to be able to manage that data and enable physicians to trust patients when they give them the data.”

Patients should have access to a single data repository, Schneider said. “One way to get there—now that we have all of these people signed up in insurance plans--is to have the insurers provide it to patients.” Once that data is in a single place patients should have the ability to add, modify, delete and prioritize data, he added.

Implementation of such a system would result in a number of questions that would need answering. For example, how can a physician trust that the information provided by a patient is accurate?

It wouldn’t be easy, and there are many other questions that need to be addressed, he said, but “unless we start putting some funding and dollars into this we are never going to get there.”

In a follow-up session, Larry Ozeran, MD, president of Clinical Informatics in Yuba City, Calif., also addressed the concept of patient engagement, and referred to the Accenture Consumer Survey on Patient Engagement that found that 57 percent of consumers track their own health data, 84 percent think they should have complete access to all of their EHR data, and 71 percent believe they should be able to update their EHRs.

Of particular concern to some healthcare organizations was a finding that 40 percent of consumers would consider switching providers if they couldn’t access their EHR data online.

These numbers become more significant when one considers the avenues with which consumers are now able to provide a significant amount of health data to their providers.

“There is a very fast growing ecosystem of personal health monitoring devices with digital output,” pointed out Ozeran. “And they’re not perfect, and a lot of them are nowhere as good as medical grade equipment, but they’re cheap . . . well within the budget of a population that has no problem spending two, three, four hundred dollars on a smartphone.”

Ozeran also referenced the fact that major technology companies like Apple, Samsung and Google are pushing into the health data repository field.

“Patients want bi-directionality in the patient data flow,” he said. “They want to be able to send data to you and receive data . . . and they want it to be seamless like you are joined at the hip. So if you didn’t know . . . there is an avalanche of patient data coming your way, it’s important to think about certain things in terms of developing your policies about what you are going to do with that data when it comes to you.”

The key factors to consider when looking at the data, Ozeran said, is it’s accuracy—was it accurate when it was collected; it’s provenance—what is the chronology of ownership of the data; the format in which the data is provided; and the ability to filter the data so that a provider can determine what is useful and what isn’t.

Ozeran also pointed out that if patients are eventually able to get all of their data, the potential is there for them to share it. One of the challenges of putting together HIEs, said Ozeran, has been getting healthcare organizations to agree to share data.

He recounted the attempt in one city to get four hospitals together to form an HIE. The effort fell apart when the hospitals comprehended that one of the reasons for putting together the exchange and sharing data was to reduce costs by eliminating duplicate tests and exams. “They realized that these duplicated costs were actually their revenues,” Ozeran said. “You were asking the people whose revenue you want to decrease to pay for the process, so it’s no surprise the HIE fell apart because the incentives weren’t aligned.”

As we move into accountable care organizations and value-based purchasing, it’s possible that HIEs will become financially sustainable, Ozeran said, because those redundant studies and exams will no longer generate revenue and HIEs will be able to reduce costs.

“So the question becomes who is the beneficiary of HIE,” he asked, and suggested that ultimately the patient will become a major beneficiary because he or she not only wants to save money on co-pays, deductibles and other healthcare-related expenses, “but more to the point, [he or she has] the most vested interest in making sure their record is accurate.

“Maybe the ultimate responsibility for HIE will fall to the patient, and [he or she] will be the intermediary between all of us,” Ozeran said.