Over the past decade, a seismic shift in how people access their medical information, including sensitive test results, has taken place.

Rather than waiting for their doctor to call, or for their next doctor’s visit, a growing number of people are using secure electronic websites to view their test results online, 24 hours a day.

Anywhere between 25 percent and 73 percent of people use these patient portals set up by their medical practices, health systems, and hospitals, according to reports.

Federal policy encourages portal use as a way to help people better manage their health and to improve patient safety.

For example, studies show that physicians fail to promptly inform people in outpatient settings of between 8 percent and 26 percent of abnormal test results, including those suggesting cancer.

Ravi Jain has been accessing his test results online for about two years and said the process is empowering.

“It gives me a chance to look at my results, see where I am compared to the ranges, and then do my own research,” the 56-year-old told Healthline.

“There are a ton of resources on the internet today and then I’m better equipped to talk to my doctor,” said Jain, who lives in the Philadelphia area and works in financial technology.

The pros and cons

Many patients interviewed for a study of the University of Pittsburgh Medical Center’s electronic patient portal voiced similar opinions. “Nearly all thought that patients should have direct access to test results,” said researchers in a 2016 PLOS One journal article.

Yet, direct patient access to test results runs the risk of confusing and alarming some people, the same study showed.

Another study of 95 adults who used a patient portal at four large outpatient clinics in Houston, Texas, raised similar concerns.

About 56 percent of those interviewed who saw an abnormal test result felt concerned, confused, anxious, scared, or frustrated, as did 21 percent of those whose results were normal, according to the 2017 study.

“A lot of the folks in the study had chronic illness and sometimes they are confused about what results, even normal results, mean in the context of their overall health,” Traber Giardina, PhD, one of the co-authors and a social work researcher at the Michael E. DeBakey VA Medical Center in Houston, told Healthline.

Jack Pirozzi, a 72-year-old retiree in St. Louis, was diagnosed a year and a half ago with rheumatoid arthritis, a chronic autoimmune disease. He was put on a medication regimen that included methotrexate, a powerful immune system suppressant.

As a result, Pirozzi must have regular blood tests. His medical team explained that they would send him the results through his health system’s patient portal.

But Pirozzi told Healthline that he found the experience frustrating and upsetting.

“I’m not a scientist and I don’t know what these numbers mean,” he said.

Pirozzi would end up calling his medical team, sometimes multiple times, and waiting for someone to call him back with an explanation of the results.

Pirozzi said he had originally thought that the online lab results would include an explanatory note from his doctor, “but there was no interpretation at all,” he said.

Input from your doctor

In the Houston study, only 30 percent of patients saw a doctor’s interpretation attached to their results.

“Usually that involved some text from the doctor saying, ‘You need a follow-up,’ or ‘Everything looks great,’” said Giardina.

Recently, Pirozzi told his doctor that he’ll no longer use the patient portal and prefers to get his test results over the phone from someone who can explain them.

Kaiser Permanente, one of the nation’s largest not-for-profit health plans, was an early adopter of patient portals and has offered online lab results to all its members since 2007.

Kaiser Permanente physicians explain to patients before they go to the lab why tests are being ordered and the online results include explanations of particular values and the potential importance of abnormal results, Dr. Stephen Parodi, associate executive director for The Permanente Medical Group, told Healthline.

“We let the patient know that most physicians review the results as soon as they are available and, on the same page, provide them with a hyperlink to email their physician if they have questions,” he said.

Patients can also contact an after-hours advice center.

In the meantime, doctors may have already added a message to the online results or followed up with a phone call or secure message to the patient.

“The ability for patients to obtain their results and have greater access to physician expertise and interpretation of the results has allowed us to provide ever more accurate and optimal care,” said Parodi.

Improvements needed

Still, Giardina says many patient portals can do better.

“Patients need their information in context, so including a [doctor’s] interpretation with every test result should be considered best practice,” she said.

In addition, portals could include search boxes that direct patients to vetted sources of information because “at the end of the day, many patients are going to search online after seeing their results,” said Giardina.

The American Association for Clinical Chemistry (AACC), a global professional organization based in Washington, D.C. that’s dedicated to clinical laboratory science and its application to healthcare, has created a website for consumers who want to better understand their lab results.

It’s called Lab Tests Online and it was developed by physicians and laboratory scientists.

“The website does a wonderful job of preparing people for a test… and explaining what the results might mean once you get them back,” said biochemist Dennis Dietzen, PhD, AACC president and director of laboratory services at St. Louis Children’s Hospital.

The website has explanations for an alphabetized and extensive list of laboratory tests, including how a test is used, when a test is ordered, who should get the test, what the testing process involves, and what the test results mean.

“It’s a great place to start, but it is still not a substitute for discussing those results with your physician,” Dietzen told Healthline.

“I think physicians, by and large, love to have these conversations with consumers who are well educated about the testing process and the test results,” he said.