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Chemotalk NewsletterChemotalk Newsletter, Vol. 91 November 1, 2015 For November, more to think about than holidays: LOST IN CLINICAL TRANSLATION By Theresa Brown A classic "Far side" cartoon shows a man talking forcefully to his dog. The man says: "Okay, Ginger! I've had it! You stay out of the garbage!" But the dog hears only: "Blah, blah Ginger blah blah blah blah blah blah blah blah Ginger..." As a nurse, I often worry that patients' comprehension of doctors and nurses is equally limited -= except what the patient hears from us is: "Blah blah blah Heart Attack blah blah blah Cancer." I first witnessed one of those lost-in-translation moments as a nursing student. My patient, a single woman, a flight attendant in her early 30s, had developed chest pain and severe shortness of breath during the final leg of a flight. She thought she was having a heart attack, but it turned out to be a pulmonary embolism: a blood clot in the lungs. Treatment required several days in the hospital. Already far from home and alone, she was very worried that a clotting problem would mean she could no longer fly. When the medical team came to her room, thy discussed her situation in detail: the problem itself, the necessary course of anti-coagulation treatment and the required blood tests that went with it. To me, just at the start of my nursing education, the explanations were clear and easy to follow, and I felt hopeful they would give my patient some comfort. After the rounding team left, though, she turned a stricken face to me and deadpanned, "Well, that was clear as mud, wasn't it?" I sat down and clarified as best I could. But until then, I hadn't realized what a huge comprehension gap often exists between what we in health care say to patients and what those patients actually understand. A growing body of literature suggests that these clinical miscommunications matter, because the success of physician-patient interaction has a real effect on patients; health. In a 2005 article in the Journal of the American Medical Association, Eric B. Larson and Xin Yao, researchers at the University of Washington, claim that treatment outcomes are better when doctors show more empathy and take the time to make sure patients understand what's going on. I saw the importance of caring communication during a friend's recent heart attack scare. He had a lingering case of bronchitis and one morning found himself struggling for air. He had pain in his shoulders, back and neck and a feeling of increasing constriction in his chest. Concerned, his wife took him to the emergency room, where his breathing became even more labored. In the triage area he began sweating profusely and then collapsed. A rapid response team rushed in, put him on oxygen, started an IV, got an EKG. His wife thought she was watching helplessly, as her husband of more than 20 years died in front of her. Minutes passed and the code team revived him, but no one told her that he'd passed out because of a protective effect of his autonomic nervous system, not because his life was threatened No one fully explained that to him, either. At that point his wife called me, and knowing how confusing modern health care can be, I went to the hospital to help. I caught up with them in the cardiac catheterization lab, where the miscommunications continued. The cardiac cath showed that his arteries were clear -- but the diagnosis, explained in technical terms, meant nothing to his wife. It took over 12 hours to learn that his echocardiogram revealed all cardiac structures to be normal. (Also, no one told the wife that her husband would stay overnight in the I.C.U. because protocol required it, not because he actually needed intensive care.) Although my friend received exemplary care, neither he nor his wife felt that they had. Instead, similar to my patient in nursing school, they felt they had bee hijacked to a foreign land. The hospital staff members were obviously dedicated to restoring patients' health, but they and the work itself came across as alien obtrusive and impossible to understand. Also, my friend's problem was correctly diagnosed days later when he went to his primary care physician. Acid reflux was causing his pain: the cure was a prescription for Prilosec. Interestingly, patients in hospitals report more satisfying interactions with physicians when doctors sit down during rounds instead of standing, according to a 2012 article co-written by the researcher Kelli J. Swayden, a nurse practitioner, in the journal Patient Education and Counseling. Sitting gives the message "I have time," whereas doctors who stand communicate urgency and impatience. I don't mean to blame doctors and nurses; it can be very hard to force yourself to slow down and tune in to a patient's wavelength when you have other patients and countless pressing tasks to get to. And that's especially true today, when hospitals are focused, machine-like, on volume and flow. Bedside manner does not increase efficiency, and it certainly can't be charged for. Still: My friends had gone from blueberry pancakes at breakfast to worrying that the husband might die, and the closest anyone got to assuaging that fear was the doctor who said, "Well we've ruled out everything that will kill you right away." And that's not good enough, because going to the hospital is an exercise in trust. Ill health is frightening, the treatments we offer can be scary, and stress and anxiety make people poor listeners. Our high-tech scans and fast-paced care save lives, but we need to make time for the human issues that pull at every patient's heart. * * * Still on the subject of communication ... DOCTORS HIT A SNAG IN THE RUSH TO CONNECT Medical Records Go Digital, but Sharing Them Can Be Costly, or Impossible By Julie Creswell As a practicing ear nose and throat specialist in Ahoskie, N.C., Dr. Raghuvir B. Gelot says that little has frustrated him more than the digital record system he installed a few years ago. The problem: His system, made by one company, cannot share patient records with the local medical center, which uses a program made by another company. The two companies are quick to deny responsibility, each blaming the other. Regardless of who is at fault, doctors and hospital executives across the country say they are distressed that the expensive electronic health record systems they installed in the hopes of reducing costs and improving the coordination of patient care -- a major goal of the Affordable Care Act -- simply do not share information with competing systems. The issue is especially critical now is many hospitals and doctors scramble to install the latest versions of their digital record systems to demonstrate to regulators that they can share some patient data. Those who cannot will face reductions in Medicare reimbursements down the road. On top of that, leading companies in the industry are preparing bid on a Defense Department contract valued at an estimated $11 billion. A primary requirement is that the winning vendor must be able to share information, allowing the department to digitally track the medical care of 9.6 million active-duty military personnel around the globe. The contract is the latest boon to an industry that taxpayers have heavily subsidized in recent years with over $24 billion in incentive payments to help install electronic health records in hospitals and physicians' offices. While most providers have installed some kind of electronic record system two recent studies have found that fewer than half of the nation's hospitals can transmit a patient car document, while only 14% of physicians can exchange patient data with outside hospitals or other providers. "We've spent half a million dollars on an electronic health record system about three years ago, and I'm faxing all day long. I can't send anything electronically over it," said Dr. William L. Rich III, a member of a nine-person ophthalmology practice in Northern Virginia and medical director of health policy for the American Academy of Ophthalmology. Dr. Gelot, the ear, nose and throat specialist, uses a system made by Practice Fusion. His local medical center, Vidant Roanoke-Chowan Hospital, relies on a program built by epic Systems. There is no evidence that either company does a better or worse job of sharing information. But Epic and its enigmatic founder, Judith R. Faulkner, are being denounced by those who say its empire has been built with towering walls deliberately built not to share patient information with competing systems. Almost 18 months aft3er an Epic system was installed at Unity-Point Health-St. Luke's hospital in Sioux City, Iowa, physicians there still cannot transmit a patient care document to doctors two miles south at Mercy Medical Center, which uses a system made by another major player in the field, The Cerner Corporation. Where interconnectivity between systems does occur, it often happens with steep upfront connecting charges or recurring fees, creating what some see as a digital divide between large hospital systems that have money and technical personnel and small, rural hospitals or physician practices that are overwhelmed, financially and technologically. the University of California Davis Health System has 22 specialists installing the technology so that doctors can share patient data between its Epic system and other internal systems like the hemodynamic monitors in its critical care unit, or with some non-Epic systems outside the hospital. "We're a huge organization, so we can absorb those costs," said Michael Minear, the chief information officer at the U.C. Davis Health System. "Small clinics and physician offices are going to have a harder time." Separately, through its maintenance contracts and other agreements, Epic charges a fee to send data to some non-Spic systems. Epic is not alone in charging various fees, nor is there evidence that its fees are more expensive than its peers. But the barrier created by these types of charges "affects the small and rural providers much more significantly," Morgan Honea, executive director of the Colorado Regional Health Information Organization, a public health information exchange, said in recent policy hearings in Washington. While nearly all of the leading companies in this area have come under fire for their inability to easily share information, Epic faced some of the strongest attacks. A research report from the RAND Corporation, described Epic as a "closed" platform that made it "challenging and costly for hospitals" to interconnect with the clinical or billing software of other companies. Representative Phil Gingery, a Georgia Republican and a doctor, assailed the company in public hearings in Washington for the same shortfalls. Executives at Epic rejected the criticism, labeling it as "venders throwing smoke screens," but for the first time, the company hired a Washington lobbying firm to improve its image. Epic argues that its customers -- some of the biggest hospitals in the country -- share more records than any other. In interviews with nearly 200 providers for a study scheduled to be released in October, executives at the research firm Klas said Epic's scores were "as good or better than most of the other vendors" in its ability to share information with other systems. Moreover, at the request of Epic executives, several customers, including the Cedars-Sinai Health System in Los Angeles and the Yale New Haven Health System, and New York's Mount Sinai Hospital, sent emails to the New York Times saying they were able to share records through Epic. A sort of Microsoft of the Midwest, built on a sprawling campus on nearly 1,000 acres of farmland near Madison, Wis., the privately held Epic has emerged a a leader in the race to digitize patient medical records. Its systems hold the health records of nearly half the country. The explosion in demand under the technology incentive plan has been a windfall for Epic. Ms. Faulkner is estimated to be worth $2.3 billion. In a rare interview, Ms. Faulkner said the industry made great strides this year and noted that Epic's customers were sending increasing numbers of records each month. She and other company executives argued that the company was actually one of the first to create rules around sharing information and a platform to do so. In 2005, when it became clear to her that the government was not prepared to create a set of rules around interoperability, Ms. Faulkner said her team began writing the code for Care Everywhere. Initially seen as a health information exchange for its own customers, Care Everywhere today connects hospitals all over the country as well as to various public health agencies and registries. "Let's say a patient is coming from U.C.L.A. and going to the University of Chicago, an Epic-to-Epic hospital. Boom. That's easy," Ms. Faulkner said. "These are hospitals that have agreed to the Rules of the Road, a legal contract, that says the other organization is going to take good car of the data." Careful in her choice of words, Ms. Faulkner offered muted criticism of regulators for, essentially failing to create what she did --a contract to help providers connect to one another and a way to authenticate that only the correct person could view the patient information. "I'm not sure why the government doesn't want to do some of the things that would be required for everybody to march together," she said. Regulators responded that introperationabilitywas a "top priority" and that they recently set out a 10-year vision and agenda to achieve it, in an emailed statement from the Office of the National Coordinator for Health Information Technology. The office's spokesman added that achieving interoperability "requires stakeholders to com together and agree on policy related issues like who can access information and for what purpose." Dr. Gelot says he hopes interoperability comes sooner rather than later. "The systems can't communicate, and that becomes my problem because I cannot send what is required and I'm going to have a 1%penalty from Medicare," Dr. Gelot said. "That's asking me to do something I can't control." * * * More on medical records in December. Have a great month! * * * And if you have any thoughts of how this newsletter could be improved, please email me directly, at Elaine@elainejesmer.com. Elaine Jesmer
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