How a Data-Driven Approach Will Transform Epilepsy Care

Updated on June 7, 2022
Hand using laptop with database reports and online work concept

By Leo Petrossian, Chief Executive Officer of Nile

COVID-19 exposed massive holes in the healthcare system. But those holes have existed for years in epilepsy care, where patients often have to see a number of specialists before they can even begin the path to seizure control. For many of them, the initial diagnosis doesn’t even come from an epileptologist, but an ER tech. 73% of epilepsy patients receive their first anti-epilepsy medication from a non-neuro-specialist. Many patients bounce around from doctor to doctor before finding a workable treatment plan. The patient journey for epilepsy is not a straight line, but a long and winding road. This strikes at the heart of a three-fold problem:

  1. Access to proper epilepsy care
  2. Specialist availability
  3. Determining the right course of treatment 

Even before COVID, it could take up to eight years to be referred to an epileptologist. On top of the struggle to schedule these appointments, the process to identify the right medication is still largely based on trial and error. Discovering a medication regimen to control seizures can take about five years. For other disorders and illnesses, the time from diagnosis to treatment usually doesn’t exceed 18 months. Why? 

A Lack of Urgency in Epilepsy Treatment

According to the Epilepsy Foundation, about 1 in 26 people will be diagnosed with epilepsy nationwide, making it one of the most common neurological disorders in the world; it is also one of the most stigmatized. Epilepsy is defined as a disorder in which nerve cell activity in the brain is disturbed, causing seizures, and brings about uncertainty and unpredictability for patients and their families every day. Adults with active epilepsy are more likely to have unhealthy behaviors, other chronic health problems, and poor health. Children with epilepsy have more problems with self-care, movement, using their hands, learning, communication, and the adaptive behavior necessary to live a happy life. The disease affects every aspect of personal freedom.

The Epilepsy Foundation also reports that epilepsy patients often have higher rates of suicide, joblessness, mental health issues such as depression, and more. Even outside of the disorder’s myriad symptoms, epilepsy can have grave consequences when not addressed in a timely manner. Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of death in people with uncontrolled seizures. The question I ask myself every day is: Why aren’t we treating these people sooner?  

Many of the current treatment plans available are not sufficient for helping all epilepsy patients. Some patients’ journeys to an optimal treatment plan that suits their needs takes their lifetime. To make matters worse, there is a lack of awareness surrounding the risk factors of epilepsy. These are problems that I believe can be vastly improved, if not solved. 

The Opportunity of Data-Driven Digital Health Platforms in Treatment

The healthcare industry is experiencing a surge in digital health advances. Digital health platforms that utilize data science and artificial intelligence (AI) have the ability to shorten a patient’s path to treatment and support healthcare providers. Quite simply: we should already be doing this.  

It is common for patients with serious illnesses and disorders to seek out a second and third opinion from various healthcare providers after receiving their initial diagnosis. It can become extremely stressful for a patient to determine which recommended course of action from multiple clinicians will best suit them. Many different seizure types and epilepsy syndromes compound this confusion, making the path to diagnosis and treatment even more complex. 

Data science and AI have the ability to pattern-match a patient with the comprehensive care provider that best fits their needs, potentially saving years of time and resources for patients and healthcare providers alike. AI has the power to analyze a patient’s data, predict the treatment journey, and then route the patient to the level three and four comprehensive care centers that are equipped to evaluate and treat that subtype. Bypassing the months of routine visits and second and third opinions is the key to treating a patient quickly and efficiently. 

Data-driven digital health platforms can also expedite identifying optimal medication for a patient. This is particularly important due to the wide range of drug options, and no clear guidance for drug recommendations, when it comes to treating epilepsy. To date, the treatment of this very common disease boils down to guesswork. Sometimes the guesses work. Many times they don’t. Consider that for a moment. 

Epilepsy is a very complex disorder, reflective in how patients are treated and the different drug trajectories with different outcomes. 

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This infographic, produced by Nile, shows the 10 most prescribed epilepsy medications and the paths that typically follow when switching medications to find the best fit, demonstrating the complexity of epilepsy medication trial-and-error.

AI makes it possible to capture the complexity of thousands of datasets that are nearly impossible for neurologists to see, allowing them to take a deep dive into drug history and the combinations that have already been tested. Armed with this technology, digital health platforms provide the ability to identify a patient’s symptom patterns, aggregate and analyze the drugs that have historically worked for particular symptoms, and support healthcare providers in determining which medication best fits the patient’s needs. By applying AI, physicians can remove luck from the process, making treatment more predictable and streamlining the best combination to reach success.

Patient and caregiver communication can also be improved with digital health platforms by connecting them between appointments and giving the physician access to medication adherence, symptom, side-effects, and patient wellbeing. These digital dashboards give insight into the progress and allow the doctor to come into the room as prepared as possible, helping the patient feel seen and heard. If a medication is not working, the digital health platform should determine if the patient is eligible for surgery or other procedures as a next step. 

Data-driven epilepsy care can give patients the confidence to proceed with urgency and physicians the right tools to find the right treatment faster, resulting in a better, more predictable life with improved mental and physical health for patients and their families worldwide. 

Leo Petrossian is the Chief Executive Officer of Nile, an epilepsy management platform that replaces trying with knowing in epilepsy care through a patient app and health care provider portal. Leo is an experienced entrepreneur and digital health innovator who often speaks on medtech innovation and investments. 

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