Jenna Green, 38, has always considered herself her own best advocate when it comes to her health. But since being diagnosed with relapsing-remitting multiple sclerosis (MS) in 2016, she's had a lot to manage. One thing that has made her life easier? A patient portal—a secure website that allows patients 24-hour access to their electronic health records and other information.
Portals let patients get test results, pay bills, refill prescriptions, make appointments, and update insurance and health information, among other things. But the feature Green most appreciates is being able to message her doctor directly. Last month, for example, her neurologist ran some new blood tests, and Green wanted to get the results before her next appointment in six months. “I sent him an email through the portal, and he got back to me that day, which was much simpler than playing phone tag.”
Green isn't the only fan. A pre–COVID-19 survey from HealthIT.gov found that 40 percent of patients who had access to a portal used it at least once from January to April 2020, a 13 percent increase since 2014. And 20 percent used the portal six times during that period. The pandemic has only increased the use of portals, says Stephen Krieger, MD, FAAN, professor of neurology at the Corinne Goldsmith Dickinson Center for MS and the Icahn School of Medicine at Mount Sinai in New York City. “In our practice, we've been actively using a portal for about five years, but I started using it regularly only when the pandemic hit, as a way to keep communication going with patients when we were all dispersed,” he says.
People who use portals also may engage more with their doctors. A 2019 PLOS ONE study of more than 165,000 people with complex medical conditions found that those who used portals were more likely to come in for outpatient visits and less likely to end up in emergency departments or hospitals. “Portals make clinicians more accessible. And in some cases, portals are better than trying to get in touch by phone,” says Matthew Robbins, MD, FAAN, associate professor of neurology at Weill Cornell Medicine/NewYork-Presbyterian Hospital. “They also create a record, so any advice given between visits is included in the narrative, which makes it easier for physicians to keep track of what's going on.” Communicating through a portal may fill any gaps created by shorter visits, as doctors are pressured to see more patients each day, says Dr. Robbins.
Appropriate Use
Patient portals aren't right for everything, however. Dr. Krieger recommends using them for what he calls “logistical patient care,” like requesting prescription refills, asking if a lab value is normal, paying bills, making appointments, or asking that test results be sent elsewhere. “In my experience, the portal is very good for handling succinct questions that require a clear answer,” agrees Dr. Robbins. “For instance, during an in-person visit, I may prescribe a new medication to a patient with migraine, then ask them to email me through the portal in four weeks to let me know how they are doing, in case we need to adjust the dosage.”
As a tool, a portal may not work for everyone. “It requires a certain degree of technical savvy, which may make it difficult for people who lack those skills,” says Dr. Robbins. Moreover, not everyone has a working computer or access to a good internet connection. A June 2020 study in the Health Informatics Journal of more than 13,000 people with neurologic conditions found that Black and Hispanic patients, men, and older patients were all less likely to use portals than younger, White, female patients. Portals may not be ideal for those with neurologic disorders such as dementia or Parkinson's disease, which can affect cognition as well as manual dexterity. “My husband, who has Parkinson's, was constantly forgetting passwords, then forgetting how to reset them, then having trouble typing accurately—it got to the point where every medical appointment became a crisis,” says Elizabeth DeVita-Raeburn, who lives in New York City and recently hired an aide to help her husband.
In cases like that, it's important to let office staff know about any problems and to switch to a method of communication that works for everyone, says Dr. Krieger. “If someone is not comfortable using the portal or finds it difficult, I will absolutely use the phone instead—I am not rigid about it.”
Manage Expectations
A portal can be an effective way to communicate if patients are realistic about how soon doctors will reply and have a clear sense of when using one is not appropriate. For example, doctors don't see messages right away. “Writing to a doctor isn't like sending a text or an instant message,” says Dr. Krieger. “I may not see these messages for hours—or even for a day or two. If patients think they're communicating in real time, that leads to disappointment.”
Any time-sensitive questions or health emergencies should be handled by telephone or in person. The same goes for new symptoms, says Dr. Krieger. “If someone with MS is having a flare-up, I need to speak to or see that person to ask questions and assess severity.” Dr. Robbins agrees. “The portal isn't a good venue for talking about changes in medication or treatment plans,” he says. He also prefers to discuss new research findings in person or via telehealth.
Excessive or inappropriate messaging through portals adds hours of extra work for doctors. A January 2022 study in the Journal of the American Medical Informatics Association found that since the start of the pandemic in 2020, doctors' portal messages have risen by 157 percent. “The hours we spend on fielding those inquiries aren't budgeted into our time,” says Dr. Robbins.
Reach Out Regarding Test Results
Many times, patients will read reports or test results before their doctors can explain them, which can result in misunderstandings or concerns. “In certain circumstances, I may order a brain MRI for a patient with migraine to make sure there is no worrisome cause for the headache,” says Dr. Robbins. “The problem is, the MRIs of people who get migraines often show evidence of very small white matter lesions in the brain, which also can be associated with other conditions, like stroke. When patients read these reports without understanding them, they get worried.”
“Getting test results without context is the opposite of good communication,” says Dr. Krieger. Rather than improving doctor-patient relationships, it could undermine patient care. “I try to be thoughtful about how I present MRI results, to explain things to patients in an optimistic way,” he says. “Automatically sending off results of an MRI to the portal doesn't do any of that.”
Patients who look at test and lab results before their doctors should schedule follow-up visits soon thereafter or call their neurologists to go over everything, says Dr. Robbins.
For Green, the portal works best when she uses it as intended—especially for checking on dates of upcoming appointments. “Let's be honest—I'd just lose a paper printout,” she says with a laugh. She also cautions against messaging doctors if patients don't know them very well. “For me, it helps that I already have a good relationship with my neurologist; we know each other. And I also know that he likes messaging. I have other doctors who prefer phone calls. I think portals work best if everyone is in agreement about how to use them.”
Dos and Don'ts of Using Patient Portals
DO keep messages short and to the point. “People will write very long messages with very complicated scenarios. It's too tough to answer these things through the portal; it isn't designed for that,” says Stephen Krieger, MD, FAAN, professor of neurology at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis and the Icahn School of Medicine at Mount Sinai in New York City.
DO ask your doctors how quickly they usually respond to portal messages and discuss how they prefer the portal be used. “Whenever I see a patient for the first time, I let them know when I'll respond and when I prefer a phone call or an in-person visit,” says Matthew Robbins, MD, FAAN, associate professor of neurology at Weill Cornell Medicine/New York-Presbyterian Hospital in New York.
DO use your portal for administrative tasks such as scheduling appointments, requesting referrals, refilling prescriptions, checking on insurance, and making payments.
DO use the “attach” function to upload any important documents like outside medical records or health tracking records such as migraine diaries and sleep logs, says Teshamae Monteith, MD, FAAN, associate professor of neurology at the University of Miami Miller School of Medicine.
DO download the app to your smartphone, if possible, to make communication even easier. It's important to give the medical team a day or two to respond. And remember that sending multiple messages about the same topic may delay a response further, says Dr. Monteith.
DON'T hesitate to call your neurologist if you're worried about test or scan results you haven't discussed together. “A patient of mine once called in a panic because her lab results said her hepatitis B surface antibody was positive,” recalls Dr. Krieger. “She was concerned that she had hepatitis, but that result simply meant she'd been vaccinated for hepatitis B.”
DON'T use the portal for anything urgent or for a medical emergency. Dr. Krieger has had patients message him when they're getting infusions of their medications. “They'll say, ‘I'm waiting here for my infusion to start, and the nurse wants to know such and such,’ as though it's a text and I'll reply instantly, but I may not see that message for eight hours. That's not helpful.”
DON'T use the portal to provide feedback about staff or doctors unless specifically requested by your doctor or the office staff, advises Dr. Monteith. And understand that any sensitive information you add will be part of your permanent medical record.
DON'T use a portal if you're uncomfortable with the technology. Ask your doctor or the office staff to telephone instead or get a friend or family member to help you.