More on Patient Engagement

When the health IT expert becomes the patient

The technology is there to make navigating the health system easier for those who have traumatic brain injury, says HIMSS20 speaker Laura Jantos.

Susan Morse, Managing Editor

Update: HIMSS20 has been canceled due to the coronavirus. Read more here.

When healthcare IT professional Laura Jantos became the patient, she gained a new perspective on what is lacking in consumer-facing technologies.

Laura Jantos, who is retired as a partner in a management consulting firm leading its HCIT practice, will share her experience during HIMSS20.

HIMSS20 Digital

Learn on-demand, earn credit, find products and solutions. Get Started >>

"As reimbursement has focused on outcomes, we need to use the AI capabilities we have to get people to the right place and care paths," she said.

In 2012, Jantos suffered a traumatic brain injury from a snowboarding accident. As in many traumatic brain injury cases, her recovery became complicated, especially after a car accident in 2018, in which her vehicle was struck by another car, set back her progress.

"I had to retire from work due to the disability," Jantos said. "But I thought I could be back at it in a year."

Jantos' cognitive function is limited to about 45 minutes, twice a day.  She has found it takes all of that to navigate the current healthcare system.

"The whole revenue cycle side of things is really challenging," she said. "I get a bill and if it's messed up, it takes up the day. Why don't payment screens look like the statement?"

Researching providers, getting referrals, remembering what physicians have said and their recommendations, all become problematic to the patient with TBI. Jantos wanted access to her own data, not just visit documentation and follow-up instructions but information on how many referrals her visits generated and how many visits she has left.

She sees the issue as a technology problem.

"I am asked for information all the time and often that health system already has that information," Jantos said. "Even though I find it and provide it, such as background on prior surgeries and imaging, it's often not used or when I go online it's still not correct. That's a big waste of my precious cognitive time and really frustrating. I see people doing the intake so I don't know what is happening. This is a technology problem, not a doctor or staff problem. I see the providers struggling to use the technology. I see the front desk struggling to use the technology."

She has also found that having a traumatic brain injury requires a high level of self-advocacy, at a time when patients are feeling vulnerable. Those with brain injury can have trouble regulating emotions and situations and relating to people.

TBI is different than other diseases or chronic conditions.

"If I have cancer, I have navigators and pathways," she said. "With brain injury, there are no pathways and few specialists. It takes months to figure out. There are organizations out there trying to fill this gap. Clear information on these pathways is incredibly important."

Each year, an estimated 2.2 million people are treated for traumatic brain injury; about 50,000 die. This means many patients are living with a traumatic brain injury.

"I have a lot of resources and a lot of knowledge of how healthcare is supposed to work," Jantos said. "When we think about things like patient engagement, we don't think about brain injury. We think diabetes and heart conditions. Brain injury is prevalent and is increasing."

Laura Janto will share her experience in "Hindsight 2020: Engagement From the Patient Perspective," from 3-3:30 p.m., Tuesday, March 10, Room W300, during HIMSS20.

Twitter: @SusanJMorse
Email the writer: