Researchers at the University of Texas Southwestern Medical Center have observed a sharp increase in the number of cancer patients using MyChart, a personal health record portal application of the EPIC electronic medical record system. Their study, they say, is the first to systematically evaluate portal use in the cancer community (J Oncol Pract, doi: 10.1200/JOP.2013.001347). “As a clinician on the faculty here who sees patients multiple days a week, I had suspected that MyChart or portal use was quite high and growing with time,” said the lead author, David Gerber, MD, Associate Professor of Internal Medicine in the Hematology/Oncology Division and the Harold C. Simmons Cancer Center at UT Southwestern Medical Center. However, the rates of use in the cancer population were several times higher than had ever been reported in any other population.
One explanation for this may be that patients with cancer and their families are generally considered to be a “highly activated” clinical population that is very engaged with their care, said medical anthropologist Simon J. Craddock Lee, PhD, MPH, senior author of the study and Assistant Professor in the Department of Clinical Sciences at the center.
Encouraging patients to be further engaged in health information is one requirement for meaningful use of electronic health records as mandated through the Centers for Medicare & Medicaid, noted Ben Holland, National Director of Cancer Services at Kurt Salmon, a management consulting firm. “So, it's not enough to just have an EMR. Patients have to be able to interact with it and use that information.”
While patient portals serve as a vital gateway for this interaction, the technology also comes with a number of challenges, according to the administrators and oncologists interviewed for this article.
For the study, the team conducted a retrospective analysis of 6,495 patients enrolled in MyChart from 2007 to 2012. The mean patient age was 60, and 67 percent of the participants were women.
The median number of log-ins over the study period for each patient was 57, with a median of 3.7 per month. Over a six-year period, the number of patients actively using MyChart each year increased five-fold, while the number of total logins each year increased more than 10-fold.
The median total number of MyChart actions for each individual was 516. The most common portal actions were viewing tests results (37%), viewing and responding to clinic messages (29%), and sending medical advice requests (6.4%).
Notably, Lee said, only 0.4 percent of actions included accessing an online health reference library that was designed to provide patients with context about their laboratory, radiology, and other test results. Colleagues at the institution are now evaluating how they can adapt the interface to improve library use, he said. Clinicians and researchers are concerned that patients are performing searches on the Internet but may not always be finding the most reliable information about their condition.
The study authors also found that 37 percent of all log-ins and 31 percent of all medical advice requests occurred outside clinic hours. Additionally, a univariable analysis demonstrated that portal use was more common in men, Caucasians, and patients with upper aerodigestive malignancies.
While the study did not directly compare use patterns with non-cancer groups, the average use in the current study was four to eight times greater than what has been previously reported in primary care, pediatric, surgical subspecialty, and other populations.
Portal technology provides more engaged patients who understand what's going on with their care because they look at their laboratory and imaging tests and doctors' notes, commented Thomas Feeley, MD, Head of the University of Texas MD Anderson's Institute for Cancer Care Innovation and Head of the Division of Anesthesiology and Critical Care. MD Anderson uses a portal that was developed in-house and has been increasingly used by patients over time. “Once they start to use it they keep using it,” he said.
The technology also helps to decrease the number of phone calls for laboratory tests and is an incredible time saver for health care providers, said Feeley, who is also on the faculty of the Harvard Business School where he is a Senior Fellow.
Moreover, portals can improve two-way communication between patients and a network of providers, said Michael Hassett, MD, MPH, a breast oncologist in the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Dana-Farber, like many other cancer centers, has seen a significant increase in patient portal use over the last few years, he said.
Right now, patients are using portals in a selective way to look at test results, he noted. Over time, providers and patients will increasingly use the technology as part of routine care. For example, EPIC provides the ability to conduct electronic visits on the portal and to fill out patient questionnaires.
Posting Test Results
One of the challenges of using portals is deciding when to post test results, which without context or counseling from physicians can be anxiety-provoking for patients, the researchers noted.
The policy at UT Southwestern has changed over time, Gerber said. For example, radiology reports used to be posted 72 hours after they were finalized, but now they are posted after 72 business hours, allowing clinicians more time to contact patients directly, if necessary.
“However, it's true that in many instances, because of the nature of how a clinic is scheduled, that patients are seeing their radiation and lab results before being counseled by clinicians,” he said.
Overall, cancer patients tend to be particularly savvy about understanding their results, and their knowledge is often based on prior conversations with their physicians, Feeley said. “Certainly, if patients are getting chemotherapy, they usually know the implication of their white blood cell counts and hemoglobin.” Patients also tend to understand the meaning of their tumor markers.
Still, MD Anderson has a seven-day delay for posting lab and imaging results on its portal so oncologists can personally contact patients if they have any unexpected or alarming news about their cancer.
Moffitt Cancer Center has a policy to not post psychotherapy notes or genetic information on its internally created portal, said Mark Hulse, RN, Moffitt's Senior Vice President and Chief Administrative Officer. “We provide all other test results and clinical notes electronically.”
At one point, the center used a four-day delay before posting so physicians had an opportunity to talk directly to patients about any alarming laboratory or imaging results. “We were concerned about creating stress and anxiety, but anecdotally, that hasn't played out much for us.”
In fact, a patient advisory council was instrumental in changing the delay to 36 hours. “We have not heard about any major concerns,” said Hulse. “Our providers are reaching out to patients in a timely way if they need to discuss results.”
Roswell Park Cancer Institute has established a two-tier release policy for its internally created portal MyRoswell to address patient anxiety concerns and to comply with both federal and New York State regulations, said James Thompson, MD, Assistant Professor of Oncology in the Department of Medicine, Assistant Member of the Department of Immunology, and Interim Chief Medical Information Officer.
Results that are not felt to have a significant risk of a negative emotional impact are automatically released within four business days, while results that may upset patients are released 30 days after they are available to the ordering provider.
Moreover, Roswell Park providers can manually release results, and all information that is available with an end-of-visit summary is automatically posted, he explained.
Messaging After Work Hours
Another challenge centers are facing is patients messaging them via the portal after work hours.
UT Southwestern's portal includes a warning statement advising patients who are experiencing a medical emergency to seek immediate care, Gerber noted. However, such guidance requires that patients triage their own symptoms. Some symptoms such as back pain that aren't alarming in the general patient may need to be evaluated immediately in someone with cancer.
About one third of patients at Santa Monica Hematology-Oncology Consultants send the practice messages during the evenings and weekends, said Marilou Terpenning, MD, a medical oncologist there and Chair of the Cancer Committee at Providence Saint John's Health Center in Santa Monica. However, this may be due to the long commute times in Los Angeles, she noted.
One way to address this issue, Gerber et al wrote in their paper, is to encourage the use of call centers through which patients are connected to an on-call physician.
At Moffitt, patients tend to use the call center on weekends and evenings rather than using the portal if they need to contact an on-call physician about their care, Hulse said.
Making Use Meaningful
Much of the focus among cancer and other health centers has been on getting a patient portal up and running and not on long-term usefulness, Holland said. “A lot of portals are rudimentary. Patients can access basic health record information and email physicians in a more secure manner, but patient adoption and perceived benefits have lagged.”
Patients and their families need education and tutorials for a better understanding of how a portal works and what it can offer, which, in turn, makes the service more valuable, he added.
Physician education is also an important component and encourages provider participation, which can lead to a better doctor-patient relationship, he said. The portal should ultimately improve the level of engagement and enhance communication, not create confusion or worse, anxiety.
Tips for Patients and Doctors Using Patient Portals or Similar Online Access
In a post at the end of July on the American Society of Clinical Oncology's Cancer.Net, the site's Editor-in-Chief, Robert S. Miller, MD (@rsm2800), a breast cancer oncologist and medical informaticist at Johns Hopkins Medicine, offers eight tips to get the most out of patient portals:
- Establish expectations for response time;
- Keep the timing of test results in mind;
- Never send urgent messages;
- Limit your interactions;
- Remember portals are limited in content;
- Keep your information safe and protected;
- Don't be pressured into using a portal if you aren't comfortable; and
- Have your doctor interpret your results.
Access the full article (“The Brave New World of Patient Portals and Accessing Test Results Online”) at http://bit.ly/Xh7O3p