Patient data can improve TBI care

Traumatic brain injury is not well characterized in the medical literature and is poorly understood by most healthcare professionals.

For example, outside of the community of those who specialize in brain injury and help rehabilitate patients with TBI, medical providers often fail to recognize that vision and vestibular problems are common after brain injury. head. Too often, patients are simply told to “rest up” and their concerns about functional deficits are dismissed when the injury is not externally visible.

I learned all of this the hard way, when my youngest daughter suffered a severe brain injury at age 17 during a school event. This unique moment rocked our world for years. My once bright and athletic teen started sleeping all day and suffering from chronic symptoms. A trip to the grocery store, with all its visual stimuli, would induce a panic attack – which, at the time, felt enough like a heart attack to send us to the emergency room. Academically, she fell from the top to the bottom of her class. I was fired from my job because I had to become a full-time caregiver to meet her full-time needs.

Lynne Becker

The emotional and financial burdens of trying (and usually failing) to find providers who understood her symptoms and could help us were considerable. An ophthalmologist we consulted, for example, was indifferent because his vision was 20/40 and the ocular structures appeared to be intact. At one point, we basically accepted that she would never get over it.

Two things started to turn our lives upside down. The first was that after being referred by many other health care providers, we finally found a wonderful neuroradiologist and neurooptometrist who correctly diagnosed and began treating what we learned was severe TBI. Additional training is needed in primary care, emergency medicine, and other disciplines to address this widespread lack of knowledge about the symptoms and clinical manifestations of traumatic brain injury.

The second breakthrough came from data. As a caregiver, I often felt helpless, but as someone with professional experience in clinical trials, telehealth, and biostatistics, I understood the power of data. I started tracking my daughter’s symptoms, which helped us identify what triggered them (like those grocery store lights) and provide objective longitudinal data to her providers. Eventually, this led to the development of a healthcare app with a tracking dashboard named after my daughter’s therapy dog, Sallie. The app allows patients or caregivers to identify key neurological, visual, speech and emotional symptoms; track their frequency and severity; and share that data, along with narrative reports and even direct messages, with their healthcare providers. Physicians who are short on time can use dashboard data to be more efficient, understand the patient more holistically, and take charge of their exam billing.

Ultimately, the power of patients can be harnessed to advance brain injury research. People think that huge amounts of data are needed for AI and machine learning applications, but the reality is that trends can be seen with data from just a few hundred patients. One of the things we’ve already learned from app users is that the most pressing symptoms for patients are visual/vestibular, cognitive, and emotional issues, in that order. If visual and vestibular deficits could be identified and treated earlier, they have the potential to help everything else improve faster.

Physicians who recognize this and are able to treat visual and vestibular deficits or refer others who can treat them can be the critical starting point to changing a life.

For more information:

Lynne Becker, MSPH, is a biostatistician whose career has focused on epidemiology, clinical trials, and telehealth, including a stint managing a TBI portal and TBI clinics for military special operations personnel. She is the Founder and CEO of Power of Patients, a patient-led brain injury app. For this work, she won the MIT A-Lab Challenge and an MIT Enterprise Forum NextGen Award, was a finalist in the Massachusetts eHealth Institute’s digital health accelerator, and built relationships with key organizations including USA Olympics and the NFL Alumni Association.

Warning: The views and opinions expressed in this blog are those of the authors and do not necessarily reflect the official policy or position of the Neuro-Optometric Rehabilitation Association, unless otherwise stated. This blog is for informational purposes only and does not replace professional medical advice from a physician. NORA does not recommend or endorse any specific test, physician, product, or procedure. To learn more about our website and online content, click here.