The Big Data Revolution’s Role in Developing a Personalized Medicine Model

Shurjal Baxi, MD, MPH

In July 2020, the American Academy of Neurology (AAN) announced an expansion of its existing partnership with Verana Health with the goal of improving its Axon Registry, a patient registry that collects, reports, and analyzes real-world electronic health record (EHR) data.¹

The registry is free for US members of the AAN, and was developed to automatically collect quality improvement data, and simplify proper reimbursement, merit-based incentive payment system (MIPS), and continuing certification reporting.² Verana, originally brought into the picture in 2018 to aid in curating deidentified healthcare data for research projects, has been the AAN’s end-to-end data and technology partner for the Axon Registry for the past 2 years.

At the 2022 AAN Annual Meeting, April 2-7, in Seattle, Washington, NeurologyLive® caught up with Shurjal Baxi, MD, MPH, senior vice president, Clinical and Scientific Solutions, Verana Health, to find out what progress has been made with the registry. She pointed out that currently, the biggest benefit to the clinician community of this partnership is the removal of MIPS number generation burden from quality reporting requirements, which AAN and Verana handle through the Axon registry. Baxi explained that Verana’s goal is to work directly with the physicians to ease EHR integration and interactions to match expectations and quality through the dashboards that have been developed by Verana. Additionally, she noted that they have a team of practice experience management specialists who can help in navigating the Verana engine to facilitate the ease of this reporting.

While on-site at AAN, NeurologyLive^® inquired further with Baxi, who is trained as a medical oncologist, to hear her thoughts on the ongoing data revolution in medicine, and how the oncology field has set a roadmap of sorts for the precision medicine model.

NeurologyLive^®: As someone with a background in oncology, what have been kind the trends you've seen in neurology as the field chases the goal of achieving personalized medicine?

Shurjal Baxi, MD, MPH: I'm excited by how quickly diagnostics has sort of increased in speed in neurology. But the more tests you run, the more data you have, and the quicker you have to be able to understand what it means because, as a clinician, to order a test did not know what to do with that information is the most frustrating thing, right? In oncology, I watched it happen. We went from taking a disease like non-small-cell lung cancer and slicing and dicing it into now over 19 different subtypes, and each of them has its own therapy. In neurology, we're dealing with so many diseases that have these slow declines, and then some patients have rapid declines, and some patients do really well and stay stable over time. There has to be something that's underlying those differences. Maybe we don't know what it is yet today. But it's with the data that we're going to start to figure it out.

Based on what I've seen in oncology, this is the future of all of medicine. And it might be radiographic differences, it might be genetic differences. It might be how you process medications. We don't know where that data is going to come from, but we have to be ready to receive it and then analyze it to generate the observations that hopefully lead to the next clinical trial.

What’s the importance of the role that big data can play?

What we've learned across the board is that the data revolution can only happen if the data is created in a high-quality way because the worst thing that we could do is create bad insights based on bad-quality data. That has immediate implications for patients and that's not acceptable. I think that what's made health care a little slower to the data game is that the bar for the quality is really high. For Verana, that's where we are with AAN. We are committed that the data that we want to create for research and MIPS reporting for trials. We want it to be of the highest quality so that when we do go through the revolution, it's really the right one.

What are you hoping that the Axon Registry can become or potentially be utilized for in the long term?

I'm going to give you my answer, which is mine alone. I think that as we learn more about diseases, what we're starting to appreciate is that the categories that we once thought about are actually being broken apart into smaller parts. Genetics, clinical characteristics, response to therapy, etc. I come from an oncology background, and we've been doing this for a long time, and I'm seeing the wave of personalized medicine move into neurology as well. Once we start slicing and dicing populations into different categories that are smaller and smaller, the real power of data is that if you have it from across enough patients, you can actually start to see trends. You can turn case series into actual observations that can lead to new studies that can change practice. Or, a doctor who sees a patient over here and has a dramatic outcome can actually inform how a different doctor over there takes care of a patient because we've created this seamless loop—taking care of the patient, entering the data into the EHR, using that data to inform their care, which then feeds into their outcome, which then goes back, right? That's the vision.

As we think about the mission of the Academy, there's a really important part that data is going to play in sort of bending the curve of neurological diseases. That's really where I hope that Verana gets to be: Sitting side by side with the Academy and making this a reality. It seems so big, and yet, data has done that in so many other areas of our lives. So why can't we do it in healthcare? Hopefully, that's my vision. As a company, I think we're committed to partnering with AAN and really servicing their providers and providing access to the technology that we think can really drive care. That's a simpler answer.

Transcript edited for clarity.

REFERENCES
1. AAN expands collaboration with Verana Health. AAN. News release. July 28, 2020. Accessed April 27, 2022. https://www.aan.com/practice/aan-verana-health-expand-collaboration
2. Axon Registry. AAN website. Accessed April 27, 2022. https://www.aan.com/practice/axon-registry