BLOG: Patient data can improve TBI care
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Traumatic brain injuries are not well characterized in the medical literature and are poorly understood by most health care professionals.
For example, outside of the community of those who specialize in brain injury and help rehabilitate patients with TBI, medical providers often do not recognize that vision and vestibular problems are common after a head injury. All too often, patients are told just to “rest,” and their concerns about functional deficits are dismissed when the injury is not externally visible.
I learned all this the hard way, when my younger daughter suffered a severe TBI at age 17 during a school event. That one moment in time turned our world upside down for years afterwards. My formerly bright, athletic teenager began sleeping all day and suffering from chronic symptoms. A trip to the grocery store, with all its visual stimuli, would provoke a panic attack – which, in the moment, seemed enough like a heart attack that it sent us to the emergency room. Academically, she dropped from the top to near the bottom of her class. I was fired from my job because I had to become a full-time caregiver to attend to her full-time needs.
The emotional and financial burdens of trying (and generally failing) to find providers who understood her symptoms and could help us were considerable. An ophthalmologist we consulted, for example, was unconcerned because her vision was 20/40, and the ocular structures appeared to be undamaged. At one point, we had essentially accepted that she would never recover.
Two things began to turn our lives around. The first was that, after being dismissed by many other health care providers, we finally found a wonderful neuro-radiologist and neuro-optometrist who correctly diagnosed and began treating what we learned was a severe TBI. Further education is needed across primary care, emergency medicine and other disciplines to close this pervasive knowledge gap about the symptoms and clinical manifestations of head injury.
The second breakthrough came from data. As a caregiver I often felt helpless, but as someone with a professional background in clinical trials, telehealth and biostatistics, I understood the power of data. I began to track my daughter’s symptoms, which helped us to identify what triggered them (like those grocery store lights) and to provide objective, longitudinal data to her providers. Eventually, this led to the development of a health care app with a tracking dashboard named after my daughter’s therapy dog, Sallie. The app lets patients or caregivers identify key neurological, vision, speech and emotional symptoms; track their frequency and severity; and share that data, along with narrative reports and even direct messages, with their health care providers. Doctors who are short on time can use the data from the dashboard to be more efficient, understand the patient more holistically and support 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 artificial intelligence 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 have learned already from app users is that the most pressing symptoms for patients are visual/vestibular, cognitive problems and emotional, in that order. If visual and vestibular deficits could be identified and treated earlier, they have the potential to help everything else get better faster.
Doctors who recognize this and who are able to treat vision and vestibular deficits or refer to others who can treat them can be the critical starting point to change a life.
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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 has won the MIT A-Lab challenge and an MIT Enterprise Forum NextGen award, been a finalist in the Massachusetts eHealth Institute digital health accelerator and has forged relationships with key organizations, including USA Olympics and the NFL Alumni Association.
Disclaimer: 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 noted. This blog is for informational purposes only and is not a substitute for the professional medical advice of a physician. NORA does not recommend or endorse any specific tests, physicians, products or procedures. For more on our website and online content, click here.
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