Charting a course: New study illuminates how cancer patients use online health portals

While patients used to have to rely primarily on information received from their doctor in the clinic or over the phone, they can now access the same information, on their own schedules, with just a few clicks of a mouse.

However positive or negative that information is, being able to access it easily and consistently is a hallmark of these systems. But is all that information really what cancer patients want?

Recently, a team of medical student researchers at the UW Carbone Cancer Center, including Rebecca Luoh, sought to better understand how cancer patients are using these systems, and what trends can be determined from that information. The results of their investigation were recently published in the journal Cancer Medicine.

Patient health portals, such as MyChart, are systems used by healthcare providers to provide the most accurate, up to date information to patients regarding their health. Not only do they contain vital medical information, but these portals can also be used to schedule appointments, order prescriptions and send direct messages to a care provider.

“A really interesting question that hadn’t been answered was how patients with cancer use portals as it relates to their cancer,” Luoh said.

To answer that question, Luoh and her team conducted a retrospective analysis of the MyChart usage of nearly 6,000 cancer patients at NCI-designated cancer centers across the United States.

Some surprising findings resulted, which essentially indicated the different needs of cancer patients in how they want to receive information and how frequently they do so. Specifically, the notion that cancer patients would be more inclined to visit MyChart did not turn out to be true.

Luoh, a third-year medical student, described this challenge in further detail, and the useful information that came from those contrasting results.

“Our findings ended up being the opposite, in that for both sending messages and viewing test results on MyChart, patients used it less frequently for cancer-related purposes,” said Luoh.

While that might seem contradictory, it provides evidence to UW Carbone patients feeling supported and informed through means other than MyChart for critical information. One example of this is UW Carbone’s triage line, which is a phone line that connects patients to on-call nurses that can provide active assistance and referral information.

“I think for a lot of cancer patients, calling the triage line might just be easier than trying to go write a message to their provider,” Luoh said.

Another area that Luoh and her team studied was how different demographic groups engaged with MyChart.

One disparity they discovered in the data was a usage gap between cancer patients in rural versus urban areas. More than 70 percent of the rural population that was studied had either no previous usage of MyChart or very infrequent usage at all; a stark contrast to those living in urban areas, who utilized MyChart more than 70 percent of the time.

Focusing on why these differences exist, the study’s authors suggest this may be due to differences in broadband coverage in rural areas. Moving forward, the hope is that informatics will be able to touch many more lives of those who are burdened with cancer, especially those in rural areas, who may live further away from the physical location where they receive care.

Now that researchers have a better understanding how these portals are used, the next step is figure out how to best tailor these systems to the unique needs of cancer patients.

“We’re hoping there can be future studies looking at optimizing how MyChart runs for patients who want to use it for cancer purposes,” said Luoh.

Creating meaningful technological solutions to support those with cancer is at the core of cancer informatics, and is an important part of UW Carbone’s mission to support patients before, during and after treatment.