Patient engagement is an important part of how hospitals and health systems do business. It can encompass many different initiatives, from offering online scheduling capabilities to sending text reminders to patients for follow-up care. But when it comes to those with traumatic brain injuries, some of those patient engagement efforts can be lacking.
Understanding the nature of traumatic brain injury, or TBI, can help to illuminate why that is. And few people understand TBI better than Laura Jantos.
Jantos, a retired healthcare information technology professional and charter president at HIMSS, suffered the first of two traumatic brain injuries during a snowboarding accident in 2012. In 2018, she suffered a second incident of TBI, and recently in a HIMSS20 digital presentation, she spoke about her challenges -- and how the healthcare system has an opportunity to improve engagement among those with TBI-related cognitive issues.
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What can be tricky for providers is that these issues can manifest very differently from patient to patient. Jantos, for example, has a fairly strict cognitive limit: She can focus her mind on complex mental tasks for only about 45 minutes, twice a day. If it's an especially difficult or intense cognitive task, she may get headaches and have to stop after about 35 minutes.
Jantos was fortunate to have competent, dedicated healthcare specialists tending to her condition after the snowboarding accident. But a car accident in 2018, in which a car swiped her from the side, compounded the issue and added further complications.
"I found out that within about a week, all of my former providers, who are amazing, were basically retired," she said. "Here I was, going through this whole process again."
From a social determinant of health standpoint, Jantos is lucky in that she's educated, has a stable home environment and has support from family and from others who have suffered from traumatic brain injury.
"I've been in healthcare IT for a bajillion years and I understand what the limitations of the system are," she said. "I know when I walk into a room if a system wasn't designed to do what it needed to do on a particular day."
And because of that, she has seen opportunities for health providers to engage with TBI patients in ways they're not currently leveraging, with data that isn't being used in the way that it could be.
"I understand that over time, health systems have changed, and they're increasingly trying to compensate physicians based on positive outcomes," she said. "What I find is that when we think about patient engagement, we're doing it in simplistic terms – whether the patient shows up, whether they listen, whether they take the medications we ask them to take. But when we overlay brain injury onto this problem, it becomes much more complicated."
Part of the complication is that the healthcare system doesn't always account for the specific cognitive challenges that can come with brain injury – and those challenges can be wide-ranging. Lack of sleep, confusion, dizziness, headaches and feelings of being overwhelmed are common among TBI patients, and this means that some typical patient engagement initiatives – such as text reminders – aren't always effective. A text reminder can only have so much impact when a patient can't remember who the text was from, why it was sent or even if they received a text in the first place.
And incidents of TBI are increasing. According to Jantos, about 2.2 million people are treated for brain injury in the U.S each year, only about 200,000 of whom are hospitalized. In total, 5.3 million Americans are living with TBI-related injuries, and those who have suffered from multiple brain injuries are more prone to degenerative conditions that can make engagement an even bigger challenge for the healthcare system.
"When I try to make an appointment and the phone system says they have a long hold time, that's great as long as I write a note and put it on a sticky and put it on my phone so I can remember who's calling me back and why," said Jantos. "Other things are more confusing. I get reminders about appointments on my phone, texts, calls – all kinds of stuff. But I can't get all of my appointments on my phone that I can download with driving directions. It would be really helpful if I had that in a lot more integrated way that I could access.
"I can see my charts with a single login, and that's great, but there are a lot of forms and reports people with disabilities have to fill out – who you saw in the last year, why you saw them, etc. It should be click, click and done, but it's not, and that's a thing that can take me beyond my 45 minutes. The 21st Century Cures Act will hopefully help some of this, but it would be a huge help if they would help patients with some of these processes."
It's not enough, she said, to offer appointment scheduling online. TBI patients need to know what the most expedited paths are for their care, and that information can be difficult to obtain, especially for someone with cognitive limitations.
"When we think about the effort it takes for someone with cognitive impairment to engage with the health system, there's a massive opportunity," said Jantos. "We need something that's really integrated so patients can find providers who are qualified and on their plan who can help with specific issues, and we need to be able to make it to those appointments on time. I would love to see artificial intelligence used to improve search techniques, and offer pathways for me on a daily basis.
"I think we can fix this," she said. "I'm really hopeful that we can. We're poised as an industry to really take things to a new level."
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