A patient portal is a website or mobile app through which patients can securely access online parts of their medical records. Often, the portal is a component of the electronic health record used at that hospital/health system, and it may include lab reports, imaging (x-ray) studies, pathology reports, medication lists, and in some cases, doctors’ and hospital notes. In addition, a portal may allow patients to send secure messages to their medical team, request/cancel appointments, refill prescriptions, and pay bills online. Some portals allow doctors to conduct “virtual visits” with their patients online for simple, straightforward conditions like respiratory infections and back pain, although this is not common yet at cancer centers. Patients usually access the portal via their desktop computer and/or smartphone or tablet using a unique user name-password combination.
Even though portals are increasingly available, many doctors and patients are still trying to become comfortable with how they fit into the traditional medical care model. Many surveys have shown that patients are overwhelmingly in favor of having this type of access to their test results, and influential organizations like the Institute of Medicine agree that engaged and informed patients are essential for high-quality cancer care.
In February 2014, the U.S. Department of Health and Human Services put into effect a new rule that allowed patients to receive their results directly from the laboratory performing the testing. Previously, some states prohibited direct access for patients, requiring a doctor to deliver the results. While many patient advocates welcomed this change, some doctors’ groups expressed concern that this could lead to confusion and increased anxiety if patients received abnormal results but did not know what to do with the information.
What is the impact of portals for patients at cancer centers? Researchers from a university cancer center in Texas found that the three most common reasons patients used the portal were to view test results, to respond to messages from clinic staff, and to request medical advice. They found that older and non-white patients were significantly less likely to use the portal. They also found that 37% of patients sent “advice requests” to their providers on evenings and weekends. Since the portal is usually not monitored when the clinic is closed, this could cause confusion and potentially dangerous delays in medical care if patients expected that their online requests were being viewed and acted upon during those times.
When my own patients started using our patient portal “myChart” at Johns Hopkins in 2013, I was excited that they would now have greater access to their test results and clinic services than what was previously available by phone. However, we have learned some of the challenges associated with this “brave new world.” Here are some helpful tips for patients and doctors using a patient portal or similar online access.
Establish expectations for response time. Most clinics will have an established workflow for answering patient messages. For example, nurses may review messages first and then pass on those to the doctor that require his/her input, and this process may take a minimum of 48 to 72 hours.
Keep the timing of test results in mind. Depending on how the portal is configured, patients may be able to view their results before their doctor sees them. Since some results reflect important information about the cancer status, such as tumor markers, it is important for patients and doctors to discuss these timing issues in advance. When patients receive potentially disturbing test results online (like elevation of a tumor marker or a scan showing a progression of the cancer), understandably they may want to discuss this with their medical team right away. However, in many cases the doctor may not be immediately available to speak on the phone or schedule a same-day appointment. In some cases, the best solution is to time the test so that the results hit the portal just before the scheduled visit when the information can be discussed. However, this is not always easy to coordinate.
Never send urgent messages. Messages with an urgent medical need (for example, a fever for someone receiving chemotherapy) should NEVER be sent through the portal; call the office instead.
Limit your interactions. Portals are best used for short, straightforward questions and messages. Extended back-and-forth exchanges between patients and medical staff are not always effective, as meanings and nuances can be lost online. If a discussion goes back and forth more than a few times, it’s probably best to schedule an appointment to discuss face-to-face.
Remember portals are limited in content. Portals usually contain lab test results and imaging reports, but doctor’s notes are rarely included. However, patients have a right to receive copies of all of their medical records, including their visit notes, but this request may have to go through the medical records department.
Keep your information safe and protected. Your medical records are deeply personal and should be kept confidential at all times. Don’t share your password with others, and be sure to choose a password that is secure. For example, don’t use the same password for all online sites or use a password easy to guess like a pet’s name.
Don't be pressured into using a portal if you aren’t comfortable. Many hospitals are enthusiastically signing up patients for their new portals, but it’s not for everybody. If you don’t feel comfortable enough with a computer, or if the idea of accessing your information online doesn’t appeal to you, you shouldn’t feel pressured to use it.
Have your doctor interpret your results. Results of lab tests are rarely straightforward, and abnormal results (and many normal ones) require interpretation by a health care professional. Many results reported as being “abnormal” do not reflect disease and may be irrelevant to the primary cancer diagnosis, but sometimes they can be a source of confusion and anxiety that is not relieved by searching online for more information. Having access to test results is the start of the conversation, and patients have every right to see them; and this access should always be incorporated into a healthy doctor-patient relationship with open and respectful two-way communication.