When Sylvia Mathews Burwell took the stage as the opening keynote speaker at the 2016 Healthcare Information and Management Systems Society (HIMMS) conference on Feb. 29, it was to deliver the latest deal with the private sector to advance the future of health care.
The Secretary of Health and Human Services had just secured an agreement from some of the industry’s biggest players to openly share information across multiple platforms to make it easier for providers and patients to access their medical histories.
“Sometimes the most important part of our job is to step back and let others take the lead,” she said. “That’s why today, I am very excited to announce that companies that provide over 90 percent of electronic health records used by U.S. hospitals have stepped up and made public commitments to make data work better for consumers and providers.”
The commitment, which included five of the country’s largest health care systems in addition to the industry’s leading developers, was another step toward the elusive grail of putting health care online: interoperability.
The key to the adoption of EHRs and its future in health care rests on the ability of providers to share the data across multiple IT systems and for patients to have more ownership of their medical records to share them.
But drawing up a road map for how to standardize health information and then connect and share it securely across multiple networks through an entire industry of IT products — each with its own proprietary information — has proven to be not only Herculean in scope, but more like a series of mythic tasks to bring together.
HHS’s Office of the National Coordinator for Health Information Technology — which spearheads EHR efforts, regulation and certification of interoperable health IT — released such a road map on Oct. 6, 2015. The plan outlined interoperability goals to be reached by 2024, including encouraging health information sharing.
In effect, ONC wants to help build what it calls a “learning health system” that is both patient-centered and allows health care providers to access patient information on demand and securely, regardless of device or software system.
But part of the challenge facing interoperability efforts is crafting the governance and compelling the industry to develop such a system. The report outlining ONC’s interoperability road map detailed the difficulties of getting providers to adopt information-sharing systems without the value of them being apparent.
“While important progress is being made today, the health care landscape continues to be dominated by fragmentation in care delivery and payment models that are largely based on the volume of services delivered, rather than the delivery of efficient, high-quality care and better patient outcomes,” the report read.
“When providers are rewarded for value, interoperability can be a significant tool to help them meet such requirements, but broad demand for interoperability has lagged and been insufficient to drive connectivity across health care providers.”
Collaboration for innovation
A day after Burwell’s announcement, Karen DeSalvo, National Coordinator for Health Information Technology and Acting Assistant Secretary for Health, announced a draft rule at HIMMS that would allow ONC to have greater oversight in the testing of health IT products.
The goal, DeSalvo said at the time, was twofold: to ensure that the private sector had a framework under which to apply interoperability to its technologies and to give the government more oversight as to which technologies were achieving the information-sharing functionality.
“So we would say that we are going to set goals, we’re going to move forward, we’re going to put all of our weight in one direction as the federal government, and we’ve asked the private sector to come along. They said they would,” she said at the HIMMS conference.
ONC also launched a website listing the health IT developers whose technologies met the certification. But one of the biggest challenges facing the industry when it comes to information sharing is not the achieving ONC certification, but instead the legislation that protects patient information, the Health Insurance Portability and Accountability Act of 1996 or HIPAA.
For patient information to be shared, it still must be both secure and compliant with the law, which places strong restrictions on to whom such information can be disclosed. The interpretations of HIPAA—among other industry issues—and how the information can be shared have varied widely, leading to a practice called information blocking.
Information blocking presents problems for ONC’s interoperability goals because it is built on the fluctuations of HIPPA privacy interpretations by developers and also protections they have for the proprietary information of their IT systems.
Elizabeth Sauve, a marketing and communications executive for Privacy Analytics — a Canadian software company specializing in de-identifying patient data so it can be used for research studies — said at the HIMMS conference that many companies are already sharing data. However, she said the exchange happens through private partnerships rather than building on an interoperability network.
“A lot of companies, they may not have a statistician who would be the one [looking at the data], but they do have a lawyer. So they are using data-sharing agreements, basically confidential disclosures instead of actually making steps. There’s a lot of companies who are using [HIPPA’s] Safe Harbor, because as long as you are compliant with the regulator, who else cares?”
The questions industry was asking at the HIMMS conference largely centered on how HHS planned to make HIPAA compliance clearer for developers to know what they can share.
“There’s been a lot progress on the technical front, with common standard APIs, [Health Level 7]-type formatting for the exchange of information, but then there is the whole piece that HL 7 doesn’t address on security,” said Ken Georgi, General Dynamics’ vice president of health care enterprise systems.
“Once I give you my information, what’s the standard there that we’ve agreed to? Really, it’s around security’s cousin, privacy. If you have my information, what are you allowed to do with it?”
In an effort to educate the public on what level of access HIPPA provides, ONC announced on June 2 a series of instructional videos for patients and a Patient Engagement Playbook for Providers to better explain the patient’s role in controlling their health records.
“Many people are not fully aware of their right to access their own medical records under the Health Insurance Portability and Accountability Act, including the right to access a copy when their health information is stored electronically,” said Lucia Savage, ONC’s chief privacy officer, in a statement. “The videos we released today highlight the basics for individuals to get access to their electronic health information and direct it where they wish, including to third-party applications.”
Programs like instructional videos and provider playbooks are part of ONC’s move to shift the EHR framework to a more patient-centered model, where the public retains ownership and access of its medical records.
“We must engage individuals in order to advance the safe and secure flow of health information,” said Tom Mason, ONC’s chief medical officer, in a statement. “The playbook we’re releasing today provides clinicians with the resources they need to get the most out of their health IT and help patients put their electronic information to work to better manage their health.”
Another move is making sure that the capabilities of the health IT systems being sold to providers are clear. On June 1, ONC began listing transparency specifications to help IT buyers access information about the “costs and limitations they may encounter when implementing and using certified health IT products.”
The strategies afford HHS the opportunity to provide the public more access to the EHR information while encouraging developers to offer more compatible services with their products. Whether those products will be readily adopted is another question.
Plowing the path to interoperability
While HHS and industry are collaborating and influencing interoperability, the next challenge is to ensure the users adopt the technology.
At ONC’s annual meeting on June 1 in Washington, D.C., it showed off data from the American Hospital Association that said 96 percent of hospitals were using certified EHR systems, the lower tier of functionality, while nearly 84 percent use the higher-tied basic EHR systems.
But as the stats noted, “Possession means that the hospital has a legal agreement with the EHR vendor, but is not equivalent to adoption.”
And while 85 percent of non-federal acute care hospitals have sent EHR information to an outside party in 2015, only 65 percent have received information through their IT systems. Overall, only 26 percent of non-federal acute care hospitals were collectively finding, sending, receiving and integrating information through their EHR systems.
Adoption of a new technology can take time, and HHS has new rules in final development to incentivize EHR adoption for Medicaid and Medicare.
So while the federal government encourages and the private sector innovates, the future of interoperability will be determined by the very group it has been built for: the user.