Paramount to any successful strategy for health equity is patient centeredness, community engagement, and trust. At the heart of the ecosystem, people with epilepsy and their caregivers provide invaluable firsthand experience and insight into the challenges of managing the condition and proactively navigating the healthcare system. Their input informs solutions that are meaningful, accessible, and tailored to real needs. Equally important is the active role they play in care delivery, taking accountability for their part in adhering to care plans, taking prescribed medications, following recommended lifestyle modifications, and participating in prescribed exercises or therapies. By doing so, they not only contribute to their own health outcomes but also strengthen the overall effectiveness of the care model, creating a partnership between patients, caregivers, and healthcare providers that drives equitable and sustainable improvements in epilepsy care.

Community and advocacy organizations play a critical role by aggregating patient voices, raising awareness, championing causes, and delivering essential services. National organizations such as the Epilepsy Foundation (EF) serve as conveners, leading conversations on epilepsy care and awareness while offering services that reach communities across the country.¹⁴ Regional organizations such as Epilepsy New England and Epilepsy Chicago, alongside Advocacy groups such as the Danny Did Foundation and the Rare Epilepsy Network, complement these efforts by focusing on specific syndromes or localized community needs.^15–18 Community-based organizations addressing social determinants of health impacting the health-related social needs of people living with epilepsy in their local communities.

A unified, patient-centered coalition amplifies their collective voice, reducing competition for resources and attention while focusing on shared priorities like tackling social and structural determinants of health. Coordinated advocacy strategies and shared messaging help clear, actionable guidance reach policy and healthcare decision-makers, all the while supporting the hyperlocal nature of initiatives targeting health equity, meeting the unique needs of specific communities.

Healthcare professionals involved in the diagnosis, treatment, and management of epilepsy, bring specialized knowledge and experience to the ecosystem. They account for their patients’ health related social needs in the design and implementation of care plans to address epilepsy and other existing comorbidities. The quality of care they deliver often varies depending on their level of training, geographic location, and the structure of the healthcare system in which they operate. Thus, health care providers can lean on professional organizations, such as the American Academy of Neurology and American Epilepsy Society.^19,20 These organizations serve as a collective voice of care professionals, advocating for their needs in areas such as research, care delivery, policy, and education. They support healthcare professionals through quality measures, practice guidelines, educational resources, networking, and advocacy efforts that help shape practice standards and inform systemic improvements.

Healthcare organizations can integrate the perspectives of patients, advocacy groups, community organizations, providers, and professional organizations as they develop and implement care models, and allocate resources across services and providers to maximize access, quality of care, and efficiency. Continuity of care and multidisciplinarity are foundational to delivering high-value epilepsy care. Patients who receive regular monitoring and timely adjustments to their treatment plans experience better outcomes and reduced reliance on emergency care.²¹ Behavioral health integration, a key strategy in epilepsy care, addresses the significant mental health comorbidities that often exacerbate the condition.²² Community health centers - federally qualified health centers in the United States that provide comprehensive primary care services to underserved populations, often serving as the first point of healthcare access in communities with limited resources - play a critical role in delivering direct patient care for epilepsy and addressing broader health issues within their communities..

As healthcare systems transition to value-based care, the focus shifts from episodic treatment to continuous multidisciplinary management, prioritizing long-term health and preventing complications. This requires aligning financing and resources to support provider coordination across institutions and specialties, ensuring care continuity and equitable access.

Payers, whether commercial health plans or government-sponsored programs (e.g., Medicare and Medicaid) play a critical role in aligning incentives and resource allocations across conditions, institutions, and service lines. In a recent study analyzing patient-reported outcome data from eight centers providing specialized epilepsy care, 18.4% of participants reported experiencing barriers to medication adherence.²³ Among the reported barriers, access issues were highly prevalent, accounting for 25% of responses, with reasons including “insurance problems” and “I cannot afford the medicine.” Patients who reported adherence barriers had 0.6 times lower odds of achieving seizure control compared to those without such barriers, even after adjusting for race, ethnicity, and sex.

Insurance-driven barriers to care disproportionately affect patients with chronic and high-cost conditions like epilepsy. Insurance claim denials (e.g., for advanced diagnostics, rescue, and third generation medications - critical to achieving seizure control) exacerbate health disparities, disproportionately impacting low-income families and communities of color who already face systemic disadvantages.²⁴ Beyond financial burdens, the psychological toll on patients navigating appeal processes or facing delays in care further erodes trust in the system.

Unlike the traditional fee-for-service model, which incentivizes volume over quality, value-based payments offer a compelling solution to the challenges of epilepsy care by aligning financial incentives with measurable patient outcomes and improving efficiency.²⁵ For individuals with epilepsy, this approach means prioritizing primary and preventive care, optimizing medication adherence, and providing timely access to specialized treatments to prevent unnecessary hospitalizations and emergency room visits. One example of value-based payments in epilepsy is the implementation of care bundles for seizure management (Table 2). These care bundles, which include coordinated medication management, regular follow-up visits, and access to appropriate diagnostics, have been designed to improve overall patient quality of life for those with chronic conditions.²⁶

Despite their intrinsic alignment with what matters to patients and the value systems clinicians abide to, these payment models have yet to gain a substantial share of the contracts in the US. In an ecosystem framework, purchasers of health insurance and policymakers constitute key member systems that could help disseminate and implement value-based payments.

Purchasers of health insurance include employers and other entities representing the interests of large numbers of workers. In the US, most active workers obtain health insurance coverage through their employers. Large employers are often self-insured (i.e., they incur the cost of care for their employees) but delegate the contracting and transactional aspects of their employees’ health plans to health insurers, who operate as third-party administrators (TPA). Other entities, such as large unions or professional associations, negotiate and purchase health insurance plans on behalf of their members. Thus, purchasers hold remarkable negotiating power over the health plans and could influence the types of contracts a health plan establishes with provider organizations. Better health for their employees and members and their families engenders substantial benefits for the purchasers, including lower absenteeism, lower cost of care (for the self-insured entities), and greater productivity.

The industry sector, encompassing pharmaceutical companies, technology vendors, and other healthcare-related businesses, can substantially advance the epilepsy ecosystem. Pharmaceutical companies often focus on the development and availability of new therapies to address treatment gaps and improve health outcomes for individuals with epilepsy. Deliberate investments are needed to build trust and encourage participation among underrepresented groups, to ensure racial diversity and representation in clinical trials, to adequately assess the efficacy and safety of treatments, and reducing disparities in treatment outcomes. A notable example is the Epilepsy Research Ambassador Program.²⁷

Historically, the exclusion of healthcare purchasers, health service researchers, and practice improvement champions in the field of clinical trial research has further limited the real-world effectiveness, safety, and utilization of new therapies. For epilepsy rescue therapies, for instance, pharmaceutical companies often face significant challenges in market penetration after investing heavily in drug development.²⁸ These struggles frequently stem from missing the mark on what matters most to patients, or failing to address critical factors like financing, access, prescribing practices, and sustainable dissemination. Pharmaceutical companies and other well-resourced industry players can also help fill the gaps in research and innovation funding, Beyond financing their own drug or device development programs, these companies can make broader investments in advancing ecosystem-level knowledge and improving care delivery.

Technological advancements hold remarkable potential to reshape epilepsy care, providing opportunities to bridge gaps in access and improve outcomes. Telemedicine and remote EEG services, for instance, have transformed care delivery for patients in rural and underserved areas, reducing reliance on in-person visits and addressing transportation challenges.²⁹ Artificial intelligence (AI) tools, including natural language processing (NLP) algorithms and predictive analytics, are optimizing workflows, enhancing efficiency, and enabling earlier, more targeted interventions.^30,31 These innovations align with value-based care models by improving care quality, reducing costs, and supporting better patient outcomes.³²

However, the high cost of some technological solutions poses a significant barrier to adoption, particularly for resource-stressed healthcare organizations, which exacerbates existing inequities.³³ The case of ambient documentation solutions for epilepsy care illustrates this challenge.³⁴ While such tools promise to streamline clinical workflows and enhance the quality of care, their high licensing costs may make them inaccessible to smaller rural epilepsy centers.^35,36 This could widen existing inequities in care quality and outcomes, leaving patients in rural areas at a greater disadvantage.

To ensure that these transformative technologies fulfill their potential, a more balanced approach is essential. Vendors must consider pricing strategies that allow for broad adoption across diverse healthcare settings, including rural and low-resource environments. Policymakers and insurers should explore reimbursement mechanisms that incentivize the adoption of proven technologies, ensuring that costs do not fall disproportionately on patients. A collaborative effort among technology vendors, healthcare providers, and payers is critical to the transformation of the healthcare industry from SoS to ecosystem, where innovations improve care equitably, without widening existing disparities or placing undue financial strain on patients and providers.

Within a healthcare ecosystem, policymakers shape policies that influence healthcare access, funding, and quality. Through collaboration with other member systems, they can implement policies supporting health disparities reductions, care delivery enhancements, and effective resource allocation. Making well-informed decisions requires reliable, comprehensive data to identify opportunities for improvement, assess the impact of existing policies, and determine where resources should be directed or redirected.

Federal research organizations, such as the National Institutes of Health (NIH) and the Agency for Healthcare Research and Quality (AHRQ), play an important role in generating this essential data.^37,38 Through federal funding, these institutions support researchers who undertake health services research and comparative effectiveness studies to uncover critical insights, such as gender-based inequities in care access, the escalation of emergency room visits across states, and the rising out-of-pocket costs of medications like those for neurological conditions.^39–41 Such research not only highlights systemic challenges but also identifies opportunities to optimize policies and improve care delivery for epilepsy and other conditions in a rapidly evolving healthcare landscape.^42,43

Increased federal funding for health services research, particularly for areas such as health equity, access and quality of care, and value delivery, can expanding pathways to especially support early-career investigators to help sustain and grow the pipeline of researchers dedicated to advancing health services knowledge. Additionally, mechanisms should be established to encourage collaboration between researchers, healthcare organizations, and community stakeholders, ensuring that research findings are more immediately translated into actionable policies and practices.

Research alliances and Learning Health Systems (LHS) offer an effective framework for advancing epilepsy care and fostering collaboration. LHS identify gaps in care, measure outcomes, and implement evidence-based practices, creating a continuous cycle of improvement.⁴⁴ The Epilepsy Learning Healthcare System (ELHS), developed through the Epilepsy Foundation, exemplifies this approach.^21,45 Over the past five years, ELHS has built a robust network of patients, families, community advocates, healthcare providers, and researchers. This infrastructure prioritizes health outcomes valued within the epilepsy community and integrates community engagement, expert clinical care, and regulatory relationships to drive meaningful change. A core value of a LHS is co-production, where patients and families are equal partners in the improvement process. This approach ensures that solutions are relevant, equitable, and effective.

Expanding LHS initiatives within the field of epilepsy and across other neurological conditions and fostering partnerships across stakeholders - including government entities, industry leaders, and research communities - are necessary to addressing disparities and advancing brain health care delivery.