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For Janet Freeman-Daily, a lung cancer patient, the best way to keep track of her medical records is her 3-foot-deep file drawer at home. She maintains a complete set of printed copies and brings the most recent ones to medical appointments, anticipating that the different EHR systems used by the seven specialists she sees won't have her updated medical information.
Freeman-Daily, who is also a cancer patient advocate, says even one small piece of incorrect or missing information can be damaging, and she doesn't want to risk leaving her well-being solely to technology.
"If the records aren't correct, there is going to be a problem," Freeman-Daily, a Washington state resident, said. "We need an easier way to get EHRs from one facility to another. I hand-carry mine to make sure they get there."
Despite the efforts made by EHR vendors and providers following federal incentive programs, interoperability of widely adopted EHR systems still lags as clinicians coordinate care records by phone and fax. For patients -- especially those with chronic and delicate conditions -- the process of accessing their records and making sure different EHR systems used by their physicians are up to date is an extra burden added onto their primary medical concerns. "Patients are very sick. We don't have the energy to deal with all that," Freeman-Daily said.
Meticulous in order to survive
Michael Bihovsky, a New York City actor and patient with Ehlers-Danlos syndrome -- a series of genetic disorders that affect connective tissues, including the skin, joints and blood vessel walls -- shared an experience similar to Freeman-Daily's.
With a small number of specialists for Ehlers-Danlos, Bihovsky frequents clinics of doctors ranging from rheumatologists to neurologists and osteopaths. Bihovsky explained that after appointments, he requests disc copies of all medical information and backs it up on his computer, which he carries with him to all medical visits in case physicians need to look at specific records. Although all of his physicians have EHR systems, Bihovsky brings his medical information to make sure it is up to date and quicker to access. Bihovsky said he pays approximately $50 for copies of his records; costs quickly add up, as he requests them often.
"I've become my primary doctor in terms of keeping up with my records and doing my own research," said Bihovsky, who through the thorough process of tracking his own records came up with a correct self-diagnosis and suggested it to his physicians.
Keeping track of personal medical records isn't easy. For patients like Freeman-Daily and Bihovsky, a complete history of medical records may include years of CT and MRI scans, medical notes, pathology reports and lab results. The time it takes to retrieve records depends on the type and volume of the records. Most come in unsorted and unsearchable PDF formats, which most doctors don't have time to parse during patients' appointments.
"Theoretically, one should be able to request one facility to send the records to another facility. In reality, such requested records often don't get to the correct person in time for the patient's appointment," said Freeman-Daily.
The 58-year-old cancer patient explained her physicians usually verify information with other providers, relying on faxed copies of medical records and a series of phone calls, even within the same facility. "Right now, I'm just looking for something that can help keep me alive," she said. Suffering with metastatic lung cancer, Freeman-Daily said that although faxing documents isn't the most secure way to share information, she's willing to give up her privacy to safeguard her health.
Sarah Corley, M.D., vice chair of the HIMSS EHR Association, said she believes that for patients like Freeman-Daily and Bihovsky, the problem might have to do with patients having too many portals with their records. "There are some solutions on the way to help address this," Corley said.
In the meantime, patients and physicians are finding ways to get around the issue. "It's a nuisance, but staff are usually friendly when I ask for it," Bihovsky said, referring to his medical record. "The only reason I'm so meticulous is because I have to be in order to survive. Nobody else will do it for me."
CIOs and health IT officials weigh in
Despite the good news around the progress made on EHR adoption and meaningful use attestation, there are many drawbacks for providers. Recent industry survey responses by community hospital CIOs regarding EHR technology point out that one of the key issues to address is information retrieval. The survey shows that data entry tasks are time-consuming and providers find it difficult to search and review patient data -- both of which may result in significant productivity loss and potential risks to patient safety.
Even with the challenges, members of the EHR Association said they are working to increase EHR adoption and improve interoperability. "We're seeing more and more sharing from physician to physician," said Corley, who is also the chief medical officer of Next Gen Healthcare. As more physicians adopt EHR systems and populate them with data, expect to see increased electronic sharing, she added.
For now, however, the technology remains somewhat immature, and vendors are working to improve it. There are multiple providers with EHR systems, but without a unified system to connect them, much of record sharing depends on stacks of paper copies, unsearchable PDF files and phone calls, said Regina Holliday, a patient advocate in Washington, D.C.
"The technology is just not there yet to allow for a data-rich health information exchange," Holliday said.
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