Sharing patient data: The challenges of healthcare interoperability

©Sergey Nivens 

IT experts talk about interoperability in terms of great progress, new opportunities, and advances in patient care. With doctors, the same topic tends to generate eyerolls, skepticism, and even fear-fear of costs, poor interfaces, and more government interference in their workday. 

The fundamental idea of interoperability is simple-doctors should be able to access all data regarding their patients irrespective of where in the healthcare system the data was generated or what software was used to create it.

But experts say the path to get there requires solving a complicated puzzle of linking competing businesses, state and regional information exchanges, technology-focused nonprofits, and federal regulations. 

“If I’m at a facility using Epic, and I’m getting patients from another Epic facility, then it’s not bad. But if they are on any other EHR, the data is still coming by fax or email and it’s difficult to get the information,” says Darren Sommer, DO, MBA, MPH, who works as a hospitalist in multiple facilities and has broad experience with EHR systems. “In one hospital, I have to cut and paste patient information into a HIPAA-compliant email and send it to myself at another hospital, even though they are both on the same EHR system.”

Sommer says that he’s seen little progress toward interoperability. In some ways, it’s gotten worse as more technology floods into healthcare, adding more data from devices that may not connect with EHRs and other healthcare software.

“Even if we had complete interoperability and access to data, what do we do with it all?” says Sommer. “Ultimately, we are limited in how much time we have. The ability to find information quickly is just as important as access,” he says.

Peter Basch, MD, MACP, senior director for IT quality and safety, research, and national health IT Policy at Columbia, Md.-based MedStar Health, says part of the problem is that what a doctor needs to effectively treat patients is a constantly moving target. “Before there was any interoperable information or fax machines, doctors were satisfied with the information they received via mail or courier,” Basch says. “I believe that as the expectation of what is considered physicians’ work changes, the expectations of whether we are getting what we need will change with it.” 

Even in situations where information systems are connected, the data that doctors need will vary by role, says Basch. For example, what an ED doctor requires to see for a patient complaining of chest pain is different from an internist doing a general checkup. He adds that doctors also need a broader pool of information, including nonclinical data such as insurance coverage and prior authorization requirements. 

The root of the problem

Experts say the foundation of today’s interoperability problems started with the Meaningful Use program. It created a situation where many vendors were fighting for market share in the burgeoning EHR field, and doctors often ended up with software that wasn’t adaptable to changing needs and companies that weren’t interested in sharing patient information with competitors, even though that’s what physicians needed. 

When information was shared, it was often of little use. “You hear horror stories of moving from a page or two for a discharge summary to a mandated 50 to 100-page summary that said nothing,” says Basch. “A lot of doctors found it was a waste of time reading it and easier to just ask the patient why they were in the hospital and what their symptoms were.”

EHR purchases made in the early days of Meaningful Use can haunt physicians to this day. “The first requirement to receive incentives in stage one of Meaningful Use was that you had to obtain health IT,” says Amit Trivedi, director of health IT standards for the Health Information and Management Systems Society (HIMSS). “It didn’t matter what you bought or how you used it, just that you bought it. Now, you may be stuck with what you had and hope it evolved or maybe you picked the right one to begin with.”

Sommer says EHR companies aren’t required to share data, and have no incentive to help. “They already sold the technology, and if someone has to pay for access to patient records from other systems, that’s another revenue stream for them.” Switching EHRs is costly and time-consuming, which leaves doctors with few options.

What’s holding interoperability back

Experts say that nothing stops data from flowing between doctors other than the organizations that house it, and until that changes, interoperability will suffer. “When you are looking at interoperability and why we can’t seamlessly move data, part of it is because we are still in a growth phase,” says Robert Tennant, MA, director, health information technology policy, Medical Group Management Association. 

“There is so much opportunity out there, but it’s going to require some action, and some of that will come in the form of regulations issued by the Office of the National Coordinator for Health IT (ONC),” he says. 

One of the key regulations being crafted as part of the 21st Century Cures Act, passed in December 2016, focuses on stopping data blocking-the willful policy by companies and healthcare organizations of preventing health information from being shared.

“Healthcare providers and technology developers may have powerful economic incentives not to share electronic health information and to slow progress towards greater data liquidity,” Don Rucker, MD, national coordinator for health IT said in a blog post in June. “The Cures Act confronts information blocking by providing a comprehensive response to these concerns. The information-blocking provision addresses actions that can impede the flow of electronic health information, or its use to improve health and the delivery of care.”

ONC is also working on initiatives to make health records accessible via smart phones and creating standards for organizations to safely exchange data, but experts say questions still remain about how interoperability should work to best benefit doctors. For instance, should the information be “pushed” to the physician or “pulled,”- meaning does the doctor have to actively search for the patient’s records or should all that data be automatically delivered to all the patient’s other providers? 

Tennant says there are pros and cons to both approaches. Pushed information may be more convenient, but might result in information overload. “In the push approach, a clinician might come to work Monday and find 200 messages pushed from various entities-discharges notices, lab reports-the physician could spend the entire day going through all the data.” 

The pull approach requires the physicians to spend time searching for the patient’s information, but ensures the physician gets only the specific information they require.

The best solution, says Tennant, may be to combine both approaches, where priority patients, such as those who were in the ED, have their information pushed to their physicians as part of an alert, while data for routine exams is pulled when needed.

“This is not just a problem of getting data, but getting the right data at the right time and prioritizing it, and the industry has a long way to go to get there,” says Tennant. 

Growing pains

Almost all of the issues affecting interoperability are offshoots of its newness, says Jitin Asnaani, MBA, executive director of CommonWell Health Alliance, a nonprofit trade association focused on universal access to health data. CommonWell has more than 45 million patient records available through its network and is adding two million more each month. “We are in an early growth stage that is similar to what the internet was in ’97 or ’98,” says Asnaani. “Every year, health data is becoming a bigger and bigger part of life, which is very similar to internet development.”

But like the early years of the internet, there remain a lot of questions about quality and consistency. “There is a huge body of work and a big body of hype in this space,” says Asnaani. “Today, there is a concerted industry effort to get the data that is produced to be more consistent, complete and of higher quality. In the short term, the data itself still needs to get better.”

He says two recent major events have pushed interoperability closer to the finish line. The first was when CommonWell and Carequality-another industry trade group with similar goals- started working together. 

“This meant that you no longer had two large parties that didn’t talk to each other,” says Asnaani. “Now that we do, we have 15 of the top 20 EHR vendors on the network.” The second event was passage of the 21st Century Cures Act, whose data blocking prevention rules should provide a major boost to interoperability efforts.

In contrast to what many physicians think, Asnaani says, data blocking today originates more with health systems and providers than with EHR vendors. That wasn’t the case five years ago, when most jealously guarded their data. “Over the last five years, I don’t know of any major vendor who looks at the world that way anymore,” he says. “I still see a broad spectrum of information blocking in the provider community-they do not want to participate and do not want to share data.”

He says thin margins and a surplus of hospital beds leave health system leaders looking for every little advantage, limiting their interest in participating in health information exchanges that may give data to competitors. The Cures Act will change that. “That will unlock [health institutions] and force them to participate if they are not already planning to do so,” says Asnaani. “Our intention is to make good data available to both providers and patient.”

Asnaani acknowledges that many obstacles remain, including the fine-tuning of information for each specialty, as Basch noted earlier. But progress will continue this year and beyond, Asnaani says. He compares interoperability progress to highway building. The building of roads is going great, but the type of “vehicle” each doctor needs to navigate the roads effectively have not been built yet.

“Today, all vehicles are clunkers,” Asnaani says. “Over this year and next, we’ll start to see sedans that consistently work well and you’ll know what you are getting, but we still won’t have Ferraris or semis built for specific needs.”

Trivedi says much progress has occurred in the last 10 years, but he understands why physicians may be frustrated. “Progress isn’t the same as satisfaction, so I think it’s safe to say that folks aren’t satisfied with the progress made to date,” he says. He adds that while the government and private sector forces have been driving interoperability to date, a third player may push for significant progress in the coming years: consumers.

“If you look at all the entrants into health IT, they are focused more on consumers,” says Trivedi. Devices like smart watches generate patient data, and new smart phone apps allow consumers to track everything from their exercise to their medication usage. “I think you will see more interoperability based on that demand, because it will not just be government, but consumers demanding more interoperability.”

The information divide

One reason some doctors have seen little progress is that interoperability advancement efforts are not uniform across the country. “There is a lot of disparity depending on what physicians you talk to, what organizations they are with and where they are located,” says Trivedi. “A lot of times, the industry is focused on enterprise and large academic centers and that’s where you see the advances happen. On the other hand, smaller physician practices may not get to see all the benefits.”

This information divide concerns both health IT experts and physicians. While Basch lives in a city, he knows the challenges doctors face doctors in rural areas where broadband access may not even be available. “Physicians who do not have access to these services may at least potentially land on the wrong side of the information divide,” says Basch, adding that a rural doctor in solo practice should have access to the same information as a doctor in a large city.

“My hope is that we can accommodate that through public policy that encourages affordable broadband and encourages stakeholders in the IT community to make information available,” he says.

Tennant says physicians will have to shoulder some of the cost burden to make interoperability practical. “Patients will benefit from better care, providers will have more robust data and health plans will have fewer claims, but who ultimately is expected to pay for it? Physician practices,” says Tennant. “They have to buy the technology, they are expected to buy the software interface that links to the health information exchange or hospital.”

Jitin expects interoperability to be similar to internet service, where providers understand its value and pay a monthly fee to support it. Trivedi sees everyone paying for it in some fashion. “One way or another, we all pay,” says Trivedi. “Government makes its investment in regulations; vendors in developing products; physicians, clinicians, and hospitals have to purchase them and consumers have to purchase insurance. Those costs, one way or another, get distributed and borne by everyone in the system.”

Looking forward

Experts say the best thing doctors can do now is to assess their EHR’s capability and plans. “Don’t sit back and wait-talk to your EHR vendor,” says Tennant. “Tell them you want the ability to get access to the data, because a lot of times, vendors are saying they aren’t hearing a demand from their customers. Without that demand, it won’t move forward.” He adds that if the EHR vendor is not planning on adding interoperability access, it may be time to look for another one to avoid being left behind.

Basch says doctors need to be involved in developing the rules of the road for interoperability. “Sharing data without rules or understanding isn’t necessarily going to lead to better, safer and more affordable care,” says Basch. “We have to think about how we can better work together. We can get there and we will get there, but we can’t assume a perfect digital information flow will get there on its own.”

Jitin says there are opportunities for physicians to have a say in how interoperability develops, and to check with both vendors and health information exchange websites to learn how to get involved and offer feedback.

“Interoperability is happening now in U.S. healthcare the way the internet happened for consumers in the ‘90s,” says Jitin. “Like the early internet, you can either wait and wait and be at a disadvantage, or participate now and have a say in how it improves and get it into your practice. Ten years from now, doctors won’t know how they lived without it.”