During a Sept. 16 Senate meeting, healthcare leaders stressed the need for better electronic health record (EHR) usability, more patient access to data, and greater interoperability. Meanwhile, during the same meeting, Sen. Lamar Alexander (R-TN), Chairman of the Senate Health Education Labor and Pensions (HELP) Committee, once again pushed for a delay of Stage 3 of the meaningful use program.
The meeting was led by Sen. Susan Collins (R-ME) and Sen. Elizabeth Warren (R-MA), who both opened with statements that expressed their desires for a more interoperable, patient-centered healthcare system. “There remains a great deal of frustration for healthcare professionals in hospitals and clinics, and most of all for patients,” Collins said, speaking to the lack of data access and data sharing. “We are seeking advice on how to improve patient access for own health records. We want insights to the challenges. The fundamental question is, how can EHRs be improved to better serve patients?”
Sen. Warren mentioned that while the Health Insurance Portability and Accountability Act (HIPAA) has set important privacy standards and made it clear that patients have a right to see their information and share it with providers, there is still a ways to go before we achieve an interoperable, consumer-friendly healthcare system. “Most medical records are digital, but there is still a huge problem—systems don’t talk to each other well,” Warren said. This lack of interoperability imposes other costs such as wasted medical tests, time and money, she noted.
Key to Wednesday’s hearing were three witness testimonies from healthcare leaders in different segments of the industry— Raj Ratwani, Ph.D., scientific director at the National Center for Human Factors in Healthcare at the Washington D.C.-based MedStar Health, and assistant professor of emergency medicine, Georgetown University School of Medicine; Kathy Giusti, founder and executive chairman, Multiple Myeloma Research Foundation (MMRF); and Eric Dishman, Intel fellow, and general manager for health and life sciences, Intel Corporation.
Ratwani, known for his research on health IT vendors’ insufficient attention to EHR usability, spoke about just that, noting that “The usability of EHRs, patient portals and personal health records remains subpar and is a significant challenge that we must overcome immediately.” Downplaying the idea that the low utilization of patient portals comes from lack of interest, Ratwani said that in most cases, portals have not been designed using methods to optimize the system’s responsiveness to patient needs. “There is overwhelming evidence that usability of health IT systems impacts patient safety, and is crucial to adoption and effective use. There is a common misunderstanding that usability is only about basic screen design such as font size, color, and layout, but a better understanding is that usability needs to support the needs of clinicians of patients,” he said.
Ratwani noted that other high-risk industries, such as aviation, defense and nuclear energy, have taken this “human factors” approach, but healthcare has been slow to do so. “Patients and clinicians are able to comprehend, reason, and gain insight from health information only when the systems work in concert with the way patients and clinicians think,” he said, adding that the three human factors which have a tremendous impact on patient use of health IT are access, functionality and information quality. “To make advancements, we must refocus certification requirements to promote true usability in the design, development and implementation of health IT, with an understanding of industry constraints; increase transparency around usability; and spur competition in the marketplace by making it easier for new vendors to develop products,” he said.
Giusti’s and Dishman’s witness testimonies included personal stories, as both have overcome near-death diseases in remarkable, persistent fashion. Giusti, now founder of the Multiple Myeloma Research Foundation, was diagnosed with the disease at age 37 at which point doctors told her it was 100 percent fatal. Working with academia, government, industry, and technology partners, the MMRF created and end-to-end system in precision medicine, Giusti said. “We built our own data bank to capture the genetic changes in myeloma patients and their responses to treatment. We made this data publically available to all scientists. We built a clinical network that has conducted 60 trials of 30 compounds,” she said. “We educate our patients so they enroll in the right trial for them. Our community has seen seven new drugs win FDA approval, with three more expected in the next year. Our patients have benefited, nearly tripling survival from the three years when I was diagnosed to nine years today.”