Spotlighting Efforts to Improve Care Equity, Research Access in MS

The topic of improving research methods and access to adequate care across varying populations with multiple sclerosis (MS) was an issue of concern that was addressed on the opening day of the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2024 on Thursday, February 29. This session began with a talk from Viviane Poupon, PhD, of Brain Canada, and Marisa McGinley, DO, of Cleveland Clinic, followed by an overview on technological methods for improving MS care access.

Breaking Barriers in MS ACTRIMS Forum 2024 | image credit: forum.actrims.org

Poupon, the president and CEO of Brain Canada, kickstarted the session by giving a funder’s perspective on open science and its impact on accelerating brain research. Open science refers to a more transparent and collaborative research effort that includes the sharing of tools, results, materials, and data. Promoting open science as a new global standard “is not just about accelerating research,” Poupon posited. “It's about democratizing access to knowledge and ensuring better advancements in understanding and treating conditions like MS translate into real-world outcomes for people across diverse populations.”

When applied, Poupon argued for the capacity of open science to remove collaborative barriers, quickly identify new therapeutic targets, and reduce the startup times for clinical trials. She has seen the benefits of open science work in real time during the COVID-19 pandemic, where there was a global, collaborative response to combatting an urgent health crisis.

The open science initiative during COVID-19 ended up benefiting the MS population. In this instance, a global data sharing initiative between the MS Data Alliance and the MS International Federation collaborated to collect COVID-19 data to gather insights into the effects of the disease on patients with MS. In total, 20 data partners around the world shared data on over 7000 patients with MS. “The MS International Federation incorporated these initial insights in their global and national advice to inform people with MS and their clinicians on how to act during the pandemic, illustrating [how, by blowing] up in collaboration, we can address urgent health crises and improve outcomes across populations,” Poupon said.

Furthermore, she cited a prior data sharing initiative between the MS Consortium and the International Multiple Sclerosis Genetic Consortium that included over 12,000 patients with MS and, after surveying over 7 million genetic variants, ended up identifying the first genetic variant associated with patients’ physical disease progression. These results opened the door for new treatment approaches to manage or combat long-term disability. Many examples such as these showcase the promise of open science in the advancement knowledge and care approaches in diseases such as MS.¹

Funders play an important role for mitigating the barriers encountered in data sharing and open science, Poupon noted. They help push for the adoption of practices to elevate the usability and accessibility of research. Additionally, they support the development of infrastructure to enable open science practices.

Towards the end of her talk, Poupon gave an example of an ongoing platform utilizing data sharing to benefit patients with MS. It is known as the CANadian PROspective Cohort Study for People Living with MS (CanProCo). The goals of this initiative are to gather insights into the drivers of MS progression to advance the current landscape of MS care and the field of MS research. At present, CanProCo has recruited 1000 patients with MS and is gathering data on epidemiology, health economics, health outcomes, health services utilization, neuroimaging, and neuroimmunology. A total of 54 Canadian researchers are working to leverage open science to bring forth their discoveries on the biological mechanisms of disease progression, identify risk factors, and develop predictive biomarkers with the hopes of informing clinical treatment approaches.

At the conclusion of Poupon’s discussion to improve research and accessibility of information, McGinley, who is an assistant professor of neurology at the Cleveland Clinic Lerner College of Medicine, took the stage to transition to a prominent, patient-facing issue: how to improve access to MS care across different populations. There have been growing concerns in this regard due to the increasing numbers of patients with neurological disease, nationwide shortages of neurologists, the reality that more neurologists are moving to subspecialty care and operating in urban areas rather than rural spaces, and the financial and physical barriers to care experienced by patients.^2-4

Census data throughout the US revealed major shortages of neurologists in rural and micropolitan areas, which have 80% and 60% reduced access, respectively, compared with urban areas. Low access rates were subsequently disproportionately observed in areas with higher proportions of Hispanic individuals, males, uninsured individuals, and those with physical disabilities.⁵

Access to MS centers is worse, McGinley added. Mapping out these data showed that there were almost 18,000 Census tracts in the US where the nearest MS center was at least 60 miles away. More centers existed on the East Coast compared with the West Coast.^2,5 “And so when we think about distribution of MS patients, then those centers in those regions would have to care for significantly more patients. And then the covariance of populations that have worse geospatial access are the same for MS centers too,” McGinley stated.

The utilization of telehealth has presented an opportunity to mitigate these access barriers. The potential benefits of teleneurological practice could increase access to care for all patients regardless of where they live, expand access for at-risk populations and those with disabilities, reduce health care disruptions, and limit the financial burden for patients navigating the health care system.

Studies on telemedicine have already supported these benefits in, for example, single visits. In a 2018 analysis, patients and caregivers utilizing telemedicine saved an average of over $69 on travel-related costs and reported great amounts of satisfaction with their care. Teleneurology helped patients avoid 160 miles of associated travel on average. Furthermore, 65% of patients and 30% of caregivers avoided burdens associated with needing to miss work.⁶ The cost-effective benefits were bolstered in a 2019 crossover study that reported a reduced average cost for things like tolls, gas, parking, and wages lost due to work absence.⁷ Additionally, utilizing telehealth has shown to lead to significantly faster scheduling and completion of consultations (P < .001).^8,9

As McGinley concluded, she turned her attention to the potential solutions for achieving equitable teleneurology. To mitigate disparities patients may face, she calls for equitable access to reliable internet and devices, recognizing broadband as a social determinant of health, and efforts to improve digital literacy of patients.

References

1. International Multiple Sclerosis Genetics Consortium; MultipleMS Consortium. Locus for severity implicates CNS resilience in progression of multiple sclerosis. Nature. Published online June 28, 2023. doi:10.1038/s41586-023-06250-x

2. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: A population-based estimate using health claims data. Neurology. Published online February 15, 2019. doi:10.1212/WNL.0000000000007035

3. Gooch CL, Pracht E, Borenstein AR. The burden of neurological disease in the United States: A summary report and call to action. Ann Neurol. 2017;81(4):479-484. doi:10.1002/ana.24897

4. Dall TM, Storm MV, Chakrabarti R, Drogan O, Keran CM, Donofrio PD, Henderson VW, Kaminski HJ, Stevens JC, Vidic TR. Supply and demand analysis of the current and future US neurology workforce. Neurology. 2013;81(5):470-8. doi:10.1212/WNL.0b013e318294b1cf

5. McGinley MP, Harvey T, Lopez R, Ontaneda D, Buchalter RB. Geographic disparities in access to neurologists and multiple sclerosis care in the United States. Neurology. 2024;102(2):e207916. doi:10.1212/WNL.0000000000207916

6. Bove R, Garcha P, Bevan CJ, Crabtree-Hartman E, Green AJ, Gelfand JM. Clinic to in-home telemedicine reduces barriers to care for patients with MS or other neuroimmunologic conditions. Neurol Neuroimmunol Neuroinflamm. 2018;5(6):e505. doi:10.1212/NXI.0000000000000505

7. Robb JF, Hyland MH, Goodman AD. Comparison of telemedicine versus in-person visits for persons with multiple sclerosis: A randomized crossover study of feasibility, cost, and satisfaction. Mult Scler Relat Disord. 2019;36:101258. doi:10.1016/j.msard.2019.05.001

8. Wilkinson J, Myers L, Daggy J, et al. The VA National Teleneurology Program (NTNP): implementing teleneurology to improve equitable access to outpatient neurology Care. J Gen Intern Med. Published online June 20, 2023. doi:10.1007/s11606-023-08121-7

9. Damush TM, Wilkinson JR, Martin H, et al. The VA National TeleNeurology Program implementation: a mixed-methods evaluation guided by RE-AIM framework. Front Health Serv. 2023;3:1210197. doi:10.3389/frhs.2023.1210197