In-Depth: Providers' inevitable acceptance of patient generated health data

By Brian Dolan
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The prospect of Meaningful Use including advanced PGHD requirements

By Jonah Comstock

Dr Paul Tang Dr. Paul Tang

The Office of the National Coordinator for Health Information Technology's Meaningful Use guidelines have done impressive work in getting EHR adoption in the United States off the ground relatively quickly. The system of carrots and sticks for hospitals and other care providers is currently in Stage 2, with a recently delayed Stage 3 set to begin in 2017.

Because Meaningful Use has proven effective at moving the needle for technology adoption, stakeholders seeking greater adoption for patient-generated health data (PGHD) are looking to the Stage 3 guidelines for help. For instance, last December a group of stakeholders representing the American Telemedicine Association, the Association for Competitive Technology, the Center for Data Innovation, Continua Health Alliance, HIMSS, IHE USA, the Telecommunications Industry Association, and the Wireless-Life Sciences Alliance sent a letter to Paul Tang, chairman of the HIT Policy Committee working on Meaningful Use Stage 3 standards.

“We believe that the HITPC should appreciate the value of PGHD by setting clear expectations in MU Stage 3 for providers, patients, and other stakeholders,” they wrote at the time. “PGHD should become elemental to the efficient delivery of healthcare.”

That policy committee met earlier this month, on March 11, and presented an overview of the current direction of Meaningful Use Stage 3. In fact, the group did add a section on PGHD, but as written the guidelines won't require hospitals to actually accept device data into their EHRs. Instead, providers will be required to accept patient-generated data in the form of either secure messaging or electronically submitted structured questionnaires. Tang explained during the meeting that the omission of a recommendation pertaining to device data was because of a perceived lack of accepted industry standards.

"You've heard us talk about [PGHD] a lot of times," he said at the time. "It was our lifelong dream to have this available by Stage 3. You see, because of the immature standards or, certainly, the immature adoption of standards in the device space, we're not able to make a recommendation in that area. But we do want to include more and more information about what's happening outside our four walls, whether it's in an ambulatory care setting or a hospital setting, and getting it in front of the provider is one of those important things to do. So even though there is some development work [to be done], and there is some work [to be done] in the provider accepting and making use of this information, we thought it's really important as we bring patients onto their healthcare team."

Chuck Parker, Continua Health Alliance Chuck Parker

Chuck Parker, President and Chair of the Board of Directors of the Continua Health Alliance and one of the signers of the letter, believes there are plenty of robust, industry-developed standards for PGHD.

There's a set of standards based on open, internationally-accepted pathways that are already in place," Parker told MobiHealthNews. "Our goal is to inform the government that this has already been done. There's a robust set of mature standards that are industry capable today and are available internationally."

Continua -- now a part of HIMSS -- is on its sixth set of industry guidelines for device interoperability, Parker said, and is already working with other groups within the government, like the FDA and NIST, on these standards. He says what makes it hard to convince the HIT Policy Committee is the lack of large-scale deployments to demonstrate the existing standards.

"There are many people out there saying the standards aren't ready yet and it's because there's no wide scale deployment and no large pilots we can point to today," he said. "It's hard to move companies away from proprietary standards because they feel like they have a lock-in. They can own that relationship if they have that lock-in. From a historical perspective, some of the companies have put up roadbloacks because they want to maintain the proprietary nature of their architecture. They feel that once they move to an open architecture they can be replaced, and that really hasn't been shown to be the truth."

Qualcomm VP and Qualcomm Life general manager Rick Valencia agreed that there was work to be done on the standards, particularly getting a critical mass of device makers to adopt them.

"I think we have a long ways to go," he told MobiHealthNews. "I think it's our responsibility as an industry to figure it out. I don't think we have yet. It is a pretty big shift and an expensive development effort for these device companies and we have to come up with simpler ways for them to do it. ... We are definitely on the way and I think Continua is a great organization with the absolute right objectives. The reality ... is a lot of the device managers are not embracing it because it's expensive and they don't know what the outcomes are going to be."

Qualcomm2netMobileThere is something of a catch-22 at play, Parker acknowledged -- lack of government support is one of the things holding back the large pilots that the government is waiting to see. But it's not an insurmountable problem. And for evidence that patient-generated data can be made to work, ONC needs to look no further than other countries, which Parker and Valencia agree are currently ahead of us in terms of telehealth and telemedicine.

"When you compare us to the other developed countries, we're behind," said Valencia. "They've been using what we refer to as a telehealth and telecare for some time. I believe they have much better trust in patient-generated data than we do."

Despite the most recent line from Tang, both Parker and Valencia have confidence that when the final Meaningful Use Stage 3 guidelines are finalized, they will include PGHD from devices.

"Knowing the individuals I work with at ONC, that answer is 'yes'," Parker said. "What it looks like I can't predict yet."

"I think it's likely, but I think there's a lot of work we need to do to make that happen," Valencia said. "Everyone would like that to happen, but we've got to prove that it would be trusted and useful, before it will be included."