Building a better patient portal

You hear the complaints often: Electronic health records are difficult to navigate. Information is incomplete or hidden. And they don't actually save time.

Think these are complaints from providers? Think again—they're from patients. It's easy to forget there are two sides of the EHR: one for providers, one for patients.

Meaningful use dollars—$35 billion through May 2016—were supposed to result in EHRs that make data move not only among providers but also between providers and patients. But the stodgy software continues to pose problems.

And while providers have to use that software to meet federal requirements, patients don't. As of 2017, just 28% of patients accessed their health records online in the previous year, according to the Office of the National Coordinator for Health Information Technology. Of those patients, the majority viewed their records just one time. Barely half of providers even offered online access in the first place.

Reasons vary as to why patients don't use the portals, but a 2015 ONC survey found that roughly three-quarters of patients claimed they didn't have a need to use the information.

Providers beg to differ on the data's usefulness. “The patient engagement and ability for the patient to communicate directly with their caregiver and care team is huge,” said Andy Crowder, chief information officer at Scripps Health. “It's all about consumerism.”

Patient portal use also leads to financial efficiencies. Each patient who uses MyScripps, the system's Epic patient portal, saves Scripps about $25 per year, Crowder said, with savings coming from fewer phone calls; better routing of messages; and paperless billing, which alone has saved Scripps 
$2.5 million annually. More broadly, researchers at Ohio State University found that portal use saved health systems $89.73 per patient over a three-year period, for a total of $171,473 for a little over 2,000 patients. For an industry that's looking to save money in every corner, those savings can add up.

For those savings to materialize and grow, there needs to be a solid reason for patients to want to go to a portal. The answer isn't build it and they will come.

Often, doctors and nurses can be the most influential advocates for improved adoption. “Our best outreach is clinicians,” said Theresa Eckman, vice president of IT-EHR at SSM Health. That's because patients tend to trust their doctors, she said. Some physicians—those who are electronic messaging boosters—have even gotten all of their patients to use the portal.

On the front end, portals can help providers with such things as cutting down on phone calls and reducing no-shows. Patients who book online are more likely to show up, SSM Health CIO Philip Loftus said. The no-show rate has dropped “significantly,” he said, thanks to online scheduling, with which patients can easily adjust appointment times, rather than just not show up.

“If you have a waitlist, reducing that no-show rate is really important from an efficiency standpoint,” Eckman said.

For Dr. Steve Ommen, associate dean of Mayo Clinic's Center for Connected Care, there's also improved efficiency when it comes to sharing lab results with patients.

Some patients want to see more than just lab results and after-visit summaries. If these people are lucky, they are patients at the nearly 150 health systems that support OpenNotes, a movement to do what the name says and open notes to patients, showing them all of their clinical notes.

The movement began when Beth Israel Deaconess Medical Center, Geisinger and Harborview Medical Center launched an exploratory study in 2010, funded by the Robert Wood Johnson Foundation, to see how sharing notes would affect patients and doctors. They found that patients liked the shared notes and that doctors' workloads didn't change much.

“The goal is to make sharing the clinical notes with patients the standard of care,” said Catherine DesRoches, executive director of OpenNotes.

Now, more than 31 million patients in the U.S. can access their notes.

“As a patient, once I make an appointment, I find it very beneficial to be able to read my notes,” said Manu Tandon, CIO at Beth Israel Deaconess Medical Center in Boston. “It makes healthcare less of a black box for the patient.”

It also helps family members. “It's a way to keep the whole family included, even if they weren't able to be present in person to review what took place at our visit,” said Dr. Melissa Holmes, associate chief medical informatics officer at Rush University Medical Center. “Nowadays, people seem to be much more involved and team players in their healthcare.”

When patients go over their notes after a visit, it can help them better understand the doctor's thinking, Holmes said.

For some organizations, OpenNotes helps bring patients to their portals. “Healthcare organizations have told us anecdotally that when they really promote note-sharing, they see their portal registration numbers go up,” DesRoches said.

While providers using OpenNotes praise how it engages patients, some want to push the movement even further. At Beth Israel Deaconess, for instance, some providers and patients are piloting a new iteration of OpenNotes called OurNotes, which lets patients contribute to their own notes. “Imagine you have an appointment with a specialist—you can now electronically capture some of the key questions or topics you want to make sure you cover,” Tandon explained.

Meaningful use required providers to give patients online access to their records. But it didn't specify exactly how those functions should work, nor did it say how the actual portals should look. Those are key details to work out, though, if portals are to become useful for more than just a handful of patients.

“There's sort of a friction for end users of using a patient portal,” said Nick Hatt, a developer at Redox, a firm that focuses on APIs and data-sharing. Hatt has personally run into trouble on a patient portal. A day after telling his records to move between Epic and Cerner systems, he got an error message.

“There was the friction of figuring out how to send that thing in the first place, and then what was my next option? I just gave up,” he confessed.

While providers can ask their vendors to adjust the portals as they see fit, it's ultimately up to the vendors to design software that actually delivers what's needed. Vendors can play a role in getting more information—and useful information—to patients. “We often think of health literacy in terms of writing this incredibly detailed medical language at a third-grade level,” said Janet Campbell, vice president of R&D relations at Epic Systems Corp. “But one of the opportunities technology provides is the ability to go beyond words.” Some organizations have begun using video to present information.

For vendors, designing a portal that works for all patients is tough, said Tim Thompson, usability ambassador for Epic. “The challenge is how many types of users with so many different backgrounds there are,” he said.

Epic, Cerner Corp., Athenahealth and other vendors turn to patients themselves to test how their patient-facing software is performing. They've learned, for instance, to adjust the shape and size of icons to make them intuitive to use and visible by people with varying degrees of vision.

Cerner is currently establishing a single design standard across its products. The company is drawing on patients to figure out what those standards should be. “For patients, we have a running principle around thinking about the frame of mind they're going to be in when they interact with it,” said Paul Weaver, Cerner's vice president of user experience and human factors. “Our rolling assumption, which is validated at this point, is the emotional feeling when you're involved with healthcare is stress.”

Therefore, Weaver said, the company is working toward a standard that's warm, comfortable and clear for the end user. That means bringing in more color, for instance. “We're almost treating the patient portal as you would a high-end consumer website,” Weaver said.

Like Cerner, Athenahealth sets the bar high when approaching the design of its software, including the patient portal. “Because we're thinking of the patient as a consumer, we have to adopt industry standards, and the expectations are pretty high for mobile apps,” said Tobias Hauner, director of user experience design at Athenahealth.

The company that the vendors are all thinking of is, of course, Apple. For its part, Apple has been eyeing the EHR field for quite some time. And it's even edged its way in by letting patients from certain health systems download their records onto their iPhones via the Health app.

Now, patients can also share their data from the Health app with third-party apps, since Apple opened the app's API. Open APIs, or application programming interfaces, stand to change a lot in healthcare, especially how patient data move around.

The federal government has been pushing the use of open APIs since the 21st Century Cures Act was passed in 2016. The ONC has been especially vocal about the tools, which let developers create applications that use services from other applications. (A developer might embed Google Maps functionality in a food-delivery app, for instance, drawing on Google's Maps API.)

Given the federal and private-sector pushes for open APIs, and given how few patients now use the portals, despite hard work by vendors and providers to get them connected, the patient portal of the future may not come from within healthcare at all. It may very well be something like Apple's Health app.

“If you look back at the original patient portal requirement in meaningful use, it was a good first step, but maybe not the right one,” Redox's Hatt said. “The right one would have been to use APIs and let patients use whatever tool they want to organize their information.” That means that the “real killer app,” as Hatt put it, won't necessarily come from an established EHR vendor.

It makes sense, then, that Apple's Health app has created so much buzz. Patients want to be able to access records across health systems in a single portal, Mayo's Ommen said.

So if the killer app maker isn't a company from within healthcare, it'll at least share one thing in common with traditional EHR players: If anyone's going to use its software, it will have to give patients what they want.