Research Indicates Online Personal Health Records May Empower Ill Teens

The proliferation of technology in health care has made the following scenario a common occurrence:

You go to an appointment with your physician, you get some tests, and then you receive an email linking to an online patient portal. That online portal lets you access personal health records (PHRs) that include test results, prescription information, and visit summaries. It also provides features like messaging, medication refill requests, and appointment scheduling. If you see nothing concerning, you go about your day. If something gives you pause, you follow up with your doctor.

For many adults, checking test results is the extent of the use of these online patient portals. A team of researchers in the Georgia Institute of Technology’s School of Interactive Computing has found, however, that adolescents and emerging adults in this digital age are interested in using the technology more and have come to expect it as an active component of their health care.

The team, which was led by Assistant Professor Lauren Wilcox, conducted a longitudinal study over the course of 19 months with Children’s Healthcare of Atlanta (CHOA) to examine the use and accompanying challenges of the online technology.

The results were published in a paper, Adolescent and Caregiver use of a Tethered Personal Health Record System, that was presented at the American Medical Informatics Association annual symposium in November.

The study focused specifically on patients between the ages of 13–17 at CHOA Scottish Rite and Egleston, who were suffering from cancer and blood disorders and engaging regularly with health care systems. They recorded usage over time by both adolescents and their parents through audit log analyses, and they conducted independent surveys and interviews with both parties.

The team examined how PHR usage differed between adolescent pediatric patients with cancer and blood disorders and their parental caregivers, which features of a PHR pediatric patients found valuable compared to their parents, and they probed the motivations of pediatric patients and their parents for using the technology.

Wilcox’s team will use insights from the study to outline considerations for the design of health IT systems to better engage adolescent patients.

In short, the study found that the teens are indeed using the technology. Parents more actively scheduled appointments, but Wilcox’s team found that teens liked to utilize the system before visits for reminders and updates, not just after the visit.

“They used it as a coordination tool with their families,” Wilcox said. “But these systems weren’t necessarily designed with that use in mind. They were designed to provide reports on appointments, reports on lab tests, or to ask a question and receive a quick answer. We found that they are being used to facilitate awareness between family members who are all using this, and to communicate and coordinate with each other.”

When compared to parents, teens reported a more positive attitude toward the impact of the system on their perceived ability to manage their care.

After using the system, they reported having known more about their health in general and the care their doctor provides them, than their parents. They also reported that the information in their personal health records led them to ask questions that they might not have known to ask before. Finally, they had slightly higher expectations that the portal system would lead them to take actions to improve their health.

“We found that for teens, it’s an essential mechanism for learning something about their health and engaging with their health care,” Wilcox said. “Their parents might appreciate an online tool, but not strictly need it.

“Parents already had many interactions with the healthcare system and they communicate in other ways with clinicians, so the portal is more of a supplement to those interactions. For teens, the online tools have the power to shape their experience with the healthcare system. Cultivating an informed relationship with their own health can actually start with the online portal.”

Ultimately, the study is meant to be one in a series of steps that can help in the design of better systems. The hope is to inform the implementation of better communicative systems, support ongoing relationships between patients and their care team members, provide interactive reports that will include age-appropriate explanations, and, on a broader scale, examine how to better shape policies concerning access to the systems by adolescents.

“It is interesting that adolescents and young adults often have a worse outcome compared to children and adults with the same tumors,” said Dr. Thomas Olson, a director of the Solid Tumor Program at the Aflac Cancer and Blood Disorders Center who worked with Wilcox’s team on the project. “There is a real strong emphasis on improving oncology care for adolescents and young adults. Anything that engages adolescents to improve their compliance would be advantageous. In this generation, digital approaches seem to work best.”

Other Georgia Tech researchers performing the study included Human-Centered Computing Ph.D. student Matthew Hong and Computer Science Ph.D. student Clayton Feustel.

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