Patient apps can lead to confusion, undue concern

Dr. Adam Cifu received a message from one of his patients through the health care app his practice uses.

“My GFR [a kidney health measurement] is abnormal,” the patient texted. “I looked it up and I have stage 3 chronic kidney disease. Why have you never told me about this? I looked back and it seems like my GFR is falling. It is 58 now while it was 64 ten years ago?”

Dr. Cifu patiently replied.

“Your GFR is calculated from a formula that includes your age,” he wrote. “Your creatinine has been rock-stable. You have stayed in good shape. Your GFR falls a bit as your age increases. You have no risk factors for kidney disease. Your kidneys will outlive you.”

The exchange, cited in Dr. Cifu’s Sensible Medicine newsletter, was an example of how electronic medical record access can lead to undue concern and confusion for patients.

Apps like MyChart make health data available to patients faster than ever, but there are cautions.

Dr. Cifu, a general internist in UChicago Medicine’s Primary Care Group, outlined his likes and dislikes of such apps in “Underappreciated Harms of the Electronic Medical Record,” a two-part newsletter series in May available here and here. He discusses the drawbacks of both rapid patient access to test results and doctor-patient messaging.

Two-way confusion

While patients have the legal right to all their own medical records, and while it’s overall beneficial for them to have those records at their fingertips, Dr. Cifu wrote, it can also lead to confusion and undue stress for the patient.

And the doctor, too, sometimes.

“I think for the most part, (access has) made medicine better,” Dr. Cifu said in a recent interview. “But one big problem is that patients often get test results, which come out unexplained, untethered.”

The test results situation may be more problematic than messaging. Blood work results and sometimes even X-rays are in the patient’s hands­ through a phone app before the doctor gets a chance to see them. The results will have a range of overall normal levels, but that doesn’t take into account what should be considered normal for the individual.

“We get older, all of us, and lots of things fall out of the normal range, and those need some interpretation,” Dr. Cifu said.

But a patient may have to wait a day or more for their doctor to connect with them for a proper medical interpretation.

“Having spent a lot of time as a patient, I know the frustration of knowing the results are back and having to wait for the doctor to get around to looking at them, and then calling me back,” Dr. Cifu said. “That’s incredibly irritating. But as a doctor, I see a lot of people who work themselves up (over results) for no reason at all.”

He recommends that physicians get in front of the situation by explaining to their patients in advance why they’re ordering specific tests and what they’re looking for but urges the patients to wait on the interpretation.

‘A delicate balance’

Dr. J. Ashley Parker, a Samaritan Ministries member who operates the DPC practice Freedom Family Medicine with his wife, Dr. Holly Parker, in Wilson, North Carolina, said that making information easily available to patients calls for “a delicate balance.”

Freedom Family Medicine doesn’t offer its patients a portal, but they can text or email the practice asking for access to lab results. Dr. Parker sees the potential for “more harm than good in getting their labs early,” so he tries to get in front of the situation.

“I have people come in a week before an appointment to have labs done so we can go over them face to face ahead of time,” Dr. Parker said.

Often, he said, a result has “some minutiae that makes no difference.” A lab can be a bit off because a patient was a bit dehydrated or had been fasting. Those patients who get the most concerned “tend to be more anxious in general or have something that’s happened that can cause a little bit more anxiety,” he said.

“DPCs are better because we have more time to educate the patient,” Dr. Parker said. “I’m going to go through those results with them every visit and I’m going to notify them if there’s something concerning.”

While Dr. Parker is less in favor of primary care patients having early access to labs without context, “I’m not ever going to deny a patient their information.”

The hospital setting, he said, is different, especially in an emergency situation. Patients there, he said, should be kept updated on labs.

Early conversations

Dr. Cifu agrees that having a conversation before labs are even ordered is helpful, even though a patient may need to initiate that.

“I think it helps when you are with your provider to say, ‘What’s being ordered today? What are we looking for and why?’, so you’re a little bit equipped right off the bat to know what you’re looking for and so you know what these things might show,” he said.

There are times, too, when a patient needs to know that the results will be “a big deal,” Dr. Cifu said. His typical message to a patient in that case is, “These test results are probably going to be released to us at the very same time, and you may have an hour to sit with those test results before I can possibly get back to you. Maybe this is the time to just wait and let’s go over those together.”

In other words, be a patient patient.