By E’Louise Ondash, RN, contributor
Patrice Daly Cohen might have died recently if she hadn’t been such a proactive, take-charge patient.
“If you saw me, you wouldn’t think I had lupus,” said the 50-year-old from West Caldwell, New Jersey, but the mountain of paperwork from doctor visits, hospital stays and lab tests says otherwise. Keeping track of everything and coordinating the flow of information between various specialists has become a part-time job for Cohen, but somehow she manages—and it’s a good thing.
In December, Cohen was hospitalized for knee surgery.
“I was supposed to have an ACL repair,” she explained, “and I was in the OR, on an IV, and I had brought my records to the anesthesiologist. He looked at them and said he couldn’t clear me for surgery, even though they had a letter from the cardiologist clearing me.”
A few weeks earlier Cohen had learned from her cardiologist that she had a heart murmur that would require surgical correction, but was told to go ahead and have the knee repair first. Although she had a difficult time obtaining copies of her cardiology records, Cohen persisted because she knew that the anesthesiologist should have them. When he saw the written records on the morning of the surgery, he decided that the procedure presented too high of a risk, despite the earlier approval from her cardiologist.
“It’s a strange feeling to be in an OR and told you might not make it,” Cohen said. “If I hadn’t brought my own records to the anesthesiologist, I might’ve died.”
After this experience and many others—involving long wait times to receive records, difficulty lugging them from office to office, and losing them at least once—Cohen jumped at the chance to join a pilot program for online personal health records at New York Presbyterian Hospital (NYP).
Via a new web site called myNYP.org, consumers and patients not only can view their medical records, but can move and store them where they have complete access. The site uses Microsoft's HealthVault and Amalga technologies, and the information available to patients includes medical history and physicals; lab, radiology and EKG reports; surgery reports; discharge instructions; information on allergies, medications, insurance and immunizations; and emergency contacts.
“If I’m in Paris and having chest pain, instead of trying to find my EKG from a doctor – good luck with that – I can find my EKG via the internet,” explained Aurelia G. Boyer, MSN, MBA, senior vice president and chief information officer at the 2,242-bed hospital in New York City. “Even if hospitals don’t have electronic records, they have internet access. MyNYP.org [offers] the ability to obtain hospital records above and beyond what most personal health records allow patients to do.”
Despite the technological advancements that can make health information more accessible, there has been a general reluctance among providers to let patients have access to all of their medical records. Most hospitals and clinics still don’t allow it, according to Boyer. It took some convincing at New York Presbyterian.
“Doctors were a little nervous at first,” she explained. “You know we tend to think at institutions that they are our records, but we believe it is the patient’s data and are committed to putting patients first.”
The web site’s HealthVault and Amalga technologies allow patients to incorporate other applications, as well.
“For instance,” Boyer said “if you like the American Heart Association’s application for monitoring blood pressure, you can use it, or the INR for Coumadin levels.”
Nurses at NYP were consulted while the myNYP.org site was being built and suggested some of the teaching tools.
“Included on the site is a lot of instructional material developed by nurses,” Boyer said. “We’re trying to help patients understand the information we give them. For instance, if you’re looking at an EKG, an explanation will pop up in the ‘hover’ mode to tell you what the terms mean. It’s designed to reinforce all those things that nurses want to make sure gets done.”
Heart patients at the Cleveland Clinic in Ohio are also learning how to manage their health problems with HealthVault, but in a different way.
Each day, patients plug the cords from their blood pressure cuffs, scales and pedometers into the USB port of their computers. Readings are transmitted to Linda Kelly, ANP, BC, MSN, nurse manager for the section of heart failure at the Cleveland Clinic.
“When they go home from the hospital, they get the devices from us,” she said. “Then once a week, I review the information online. Graphs are created for blood pressure, the number of steps they are taking and their weight. I look at it every Monday, but they know to call me before Monday if they need to.”
The pilot program using HealthVault technology began in November, and Kelly is hoping that it helps to increase patient compliance and prevent health problems from becoming worse.
“It’s a means to improving care and satisfaction,” she said. “Patients of all ages feel that they are more involved with their care. They’ve mentioned that they are glad they are part of the study, especially for the newly diagnosed when we are titrating their meds.”
Health care providers at the Cleveland Clinic hope to recruit 500 patients who will use the HealthVault technology. The patients also have access to some of their medical records through MyChart, an online health information management tool.
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