When Diana Roberts Wienbroer, 71, of New York City, was diagnosed with breast cancer in 2000, she had a lot of work ahead of her. Like every patient in her situation, Wienbroer had to follow a prescribed regimen to shrink her tumor and eliminate the cancer. But Wienbroer quickly discovered that there was more to getting well than taking the appropriate medications and following doctors' orders.
A patient at Memorial Sloan-Kettering Cancer Center in New York City, Wienbroer found that patients with chronic conditions like hers have a lot of record keeping to do. She spent a significant amount of time confirming and changing her appointments, leaving telephone messages for various doctors, writing checks to cover medical bills, and tending to other necessary tasks to stay on top of her health care. “It took some time,” says Wienbroer, who notes that the cancer center was good at helping her stay on course. “When you’re anxious ... you’re just not as efficient.”
But Wienbroer’s load was lightened significantly in 2008, when she enrolled in a new initiative at Memorial Sloan-Kettering Cancer Center known as MyMSKCC, a secure online portal that gives patients direct access to their health-care information. Through the portal, Wienbroer can view and pay her bills, submit changes to insurance and her contact information, track appointments, request refills, send secure messages to her doctors, obtain lab results, view radiology reports, and conduct other business with a click of a mouse. “At three in the morning, if I want to, I can pay my bills or confirm an appointment,” says Wienbroer, whose cancer has been successfully treated. “It’s really great because I feel as though I have much more access to my health information.”
Memorial Sloan-Kettering Cancer Center is one of several health-care institutions that has established a patient portal. And, as demand for immediate access to health information increases, even more institutions are considering whether to institute portals and what type of information to make readily available to patients. “It’s an information age now,” says Annette J. Johnson, MD, MS, associate professor of neuroradiology at Wake Forest Baptist Health in Winston-Salem, N.C. “People are much more interested in getting detailed information about everything that’s important or even of interest to them. And, certainly, I think health care and personal health records are very important to people.”
Portal Protocol Varies
Just as the needs of every health-care institution are different, the same is true of every patient portal. Nearly all portals allow patients to pay their bills and update their contact information, but the most comprehensive ones also allow patients to view laboratory results and radiology reports. The process for releasing that information varies depending on the institution. For instance, at Memorial Sloan-Kettering Cancer Center, lab results are available to all patients enrolled in the portal as soon as the results become part of the health record, but radiology reports are currently available only to some patients and are posted four days after being finalized. “As we look at peers and what they provide in their portals, many provide radiology reports — as we do to some extent — with varying delays on when the reports are viewable for patients, generally ranging between real time to a week,” says David R. Artz, MD, medical director of information systems at Memorial Sloan-Kettering Cancer Center.
Vanderbilt University Medical Center in Nashville, Tenn., unveiled its patient portal in 2004 as part of its patient-centered care efforts. “By creating a portal where patients have access to their information, it really puts them in a position where they are actively engaged,” says Jake Block, MD, vice chair of clinical operations at Vanderbilt University Medical Center. Known as My Health at Vanderbilt, the portal contains administrative records, lab results, and radiology reports. To control how information is conveyed to patients, Vanderbilt uses a three-tiered system to determine when, if ever, to post results to the portal, Block says. Results for common tests, such as cholesterol and pregnancy tests, make up the first tier and are posted immediately. Highly sensitive results, such as HIV and certain genetic tests, are best communicated by the patient’s physician and are never posted online. However, most records, including radiology reports and thyroid function tests, fall in the middle tier and are posted three days after being finalized. “This gives the referring physician ... an opportunity to communicate the results to the patient directly before they find them on the My Health Website,” Block says.
Although many patient portals contain radiology reports, images are practically nonexistent because of limited digital storage space and image complexity. “It may not have much value to show images directly to a patient unless you do appropriate annotation,” Artz says. “I’m an internist, and when I get one of these massive MRIs, I look for the key images with the circles and arrows that the radiologist has put on the images.” Curtis P. Langlotz, MD, PhD, vice chair of informatics at Penn Medicine in Philadelphia, agrees that providing images is more difficult than providing reports, but he thinks portals will eventually include both. “As it becomes possible for patients to transfer images among their providers on the Internet, I think we will begin to see images available to patients,” he says.
While some of the benefits of patient portals are obvious, many health-care providers have reservations about making radiology reports and other test results readily accessible to patients. They are concerned that patients will misunderstand the reports and inundate their offices with phone calls, says Johnson, who has held focus groups to discuss patient portals with radiologists, other doctors, and patients themselves. “I certainly understand that rationale,” Johnson says. “But I think we should listen to the patients when they say, ‘I’d rather have a report that shows some really bad finding or even is confusing than just wait.’”
Providers from institutions that have patient portals say concerns about patient confusion and increased phone calls are unfounded. They say creating a successful portal requires two main things: an embargo on radiology reports and other potentially sensitive records to give referring physicians a chance to review them first and a messaging system so that patients can send questions to their doctors. “You might think that the number of phone calls from patients would be going up because now you’re providing them with a lot of information they’ve never received before,” Block says. “But, in fact, coupled with the messaging system, where patients can electronically request prescription refills and change appointments, the overall number of phone calls that the institution receives from patients goes way down.”
Radiologists in particular are concerned about receiving calls from patients who they haven’t actually met, Johnson says. But those who have used portals say that hasn’t been an issue. “Our radiologists rarely receive phone calls from patients about their reports,” Langlotz says. “For the most part, patients have continued to seek advice from their referring clinician with whom they have an established relationship.” While radiologists don’t receive more calls from patients as a result of a portal, having the radiologists’ names posted within the reports does make the radiologist more visible to patients. “The biggest risk as a radiologist is that the patients see you only as a name on an invoice,” Block says. “It’s very important that the value that radiologists bring to the management of patient care is highlighted, and having the product of our interaction, which is our radiology report, as part of what the patient has access to is a very good thing for radiology.” //
Jenny Jones (email@example.com) is a freelance writer.