American Epilepsy Society (AES)
Written Comments to
NINDS Request for Information
Soliciting Input on Areas of Health Disparities and Inequities
in Neurological Disease and/or Care in the United States Across the
Lifespan Notice Number: NOT-NS-20-026
AES Written Comments were reviewed and approved by the AES Board of Directors.
Comments were authored by the AES Research & Training Council chaired by Peter Crino MD
PhD and Mark Quigg MD MSc.
Submitted on June 15, 2020
Q1: Identify area(s) of health disparity and/or inequity (including race/ethnic,
sex/sexual orientation/gender identity, regional/geographic, age, educational
attainment, or socio-economic differences) in neurological disease, treatment,
care, and/or service in the U.S:
The American Epilepsy Society (AES) is honored to submit its suggestions for the 2020 NIH
RFI on addressing health disparities and inequities in epilepsy research, training, treatment,
and outcomes. Our suggestions reflect the integrated viewpoints of the AES, accounting for
the basic sciences, translational research, clinical research, and clinical care priorities of our
4500 epilepsy scientists and clinicians.
A major problem in the area of epilepsy is that disparities in epilepsy care have not received
comprehensive evaluation. Basic epidemiology must be performed in a comprehensive
fashion to adequately address even this first question; approaches may vary depending on
major determinants outlined here.
Therefore, the AES has these research recommendations that will accurately lay out
disparities in epilepsy care.
- Support epidemiological research in outcomes in epilepsy, with focus on race,
ethnicity, sex, gender, geographics, social determinants of health.
- Study access to healthcare and specifically tertiary epilepsy care in inner cities and
rural communities.
- Define factors and biases that lead to acknowledged reticence to accept perceived
invasive treatments such as intracranial EEG recordings, epilepsy surgery, deep brain
stimulation, and responsive neurostimulation among certain patient populations.
- Define specific epidemiological, neurobiological, and molecular factors that lead to
differences in epilepsy morbidity in women including hormonal regulation, sexuality,
fertility, teratogenicity, and breastfeeding.
- Create initiatives to understand how hormonal changes in transgender individuals
undergoing sex reassignment or gender affirming therapies affect seizures.
Q2: Identify determinants that help explain this/these health disparities and /or
inequities
Only through a concerted research effort outlined above will potential determinants stand
out. We anticipate, however, that the following factors affect disparities in epilepsy research
and care.
- Race
- Socioeconomic status
- Gender
- Geographic location/access to expertise
- Health care access/payer source
Q3: Identify evidence-based research strategies, health services, policies, and
other interventions that address these disparities/inequities in neurological
disease, treatment, service, or care
The membership of the AES spans all 50 states. The diversity of our American membership
informs the below recommendations:
- Support studies across state health systems to link epilepsy care outcomes to
systems of supply
Although the “A” in AES stands for “American”, we remain the premier professional
organization for epilepsy researchers and clinicians. Fully 28% of our membership consists
of those based in other countries, and this multinational diversity informs some approaches
to addressing health care inequity.
- Support studies across national health systems to link epilepsy care outcomes to
systems of supply
The recent health care crisis arising from the novel corona virus has brought telemedicine
into the forefront.
- Support studies of the use of telemedicine health care access, whether clinical or
procedural, to optimize access to mitigate geographic location as a source of inequity
- Support patient satisfaction analyses of telemedicine access for “in-home visits” for
select patient populations.
Focus across the age spectrum
- Discovery and implementation of optimal interventions during childhood will change
outcomes throughout a person’s lifetime
- Support studies of epilepsy causes and treatments in elderly individuals (age >70).
Q4: Identify knowledge gaps about disparities/inequities in neurological
conditions
The AES notes that the next generation of epilepsy researchers and healthcare providers
need fostering. We acknowledge that social and racial backgrounds and economic
possibilities to undertake careers in epilepsy are not ideally distributed. This equitable
distribution will be one means by which to address inequities in epilepsy care. A vibrant,
talented, and diverse neuroscience workforce is dependent on attracting students to
neuroscience careers. Increase efforts at the level of undergraduate, graduate and
professional levels (“pipeline proposals”) to ensure that promising and diverse trainees
consider neuroscience research as an exciting career.
- Decentralize high-level training and expertise across geographically distant research
centers to increase the quality of training across the country while also creating more
opportunities for robust neuroscience research careers in academia. Possible
strategies include multicenter institutional training programs that promote
collaboration and mentorship across institutions.
- Support for mentors (not just mentees) to dedicate effort to training the next
generation is a priority.
- Foster neuroscience training towards non-academic research career paths. For
example, develop partnerships between academic centers and industry to develop a
workforce dedicated to problem-solving to meet the needs of complex neurological
disease.
- Engage school programs to encourage participation in health care and epilepsy
research across all levels: physicians, nurses, technologists, and administrators.
- Increase mechanisms to achieve training in design and execution of clinical research.
- Consider additional funding mechanisms for less intensive programs to allow
academicians to develop baseline clinical research skill sets, such as 2.0 calendar
months x 2 years.
- Establish programs in inner city and rural communities to value neuroscience as a
career path.
Q5: Identify potential approaches for addressing these neurological disparities
and/or inequities through ongoing or new research collaborations or interventions
One approach in tackling disparity is to ensure that the those involved in epilepsy research
and healthcare reflect the populations who they serve. We share the NINDS commitment to
develop an inclusive and diverse neuroscience workforce. On our end, we are committed to
attaining equity and diversity in our research and clinical workforce through our ongoing
mentorship programs and committees. We pledge our support of all efforts by NINDS to
foster the careers of epilepsy investigators from diverse sub- disciplines, demographics and
stages. Our specific suggestions to recruit and retain a diverse workforce are listed below:
- Foster a community of neuroscience researchers that values, nurtures and welcomes
diversity, equity and inclusion. Towards this goal, develop diversity and inclusion
training programs for all NINDS grantees, their institutional leaders and their
professional organizations, similar to that required for the responsible conduct of
research training.
- Develop flexible funding programs that would permit all investigators (early career
and established) to maintain their research programs during times when their effort
needs to be reduced due to medical leave, childcare or other personal/family
responsibilities.
- Expand educational NINDS R25 programs to enrich the experiences of diverse
researchers to slow or stop the “leaky pipeline” of women and minorities from the
research and clinical arena.
- Mitigate perceived barriers and ensure ways by which more at-risk individuals remain
eligible and benefit from transition awards.
- Destigmatize perceptions amongst diverse grantees regarding training mechanisms
ear-marked for diverse populations through mentoring and educational efforts so
that more individuals participate.
- Support for mentors (not just mentees) to dedicate effort to training the next
generation is a priority.
- The staff of the NINDS provide instrumental service to the broader epilepsy research
community, particularly the extramural Program Directors and Program Officers who
support both trainees, new and established investigators. We encourage efforts to
recruit, retain and reward excellence in the NINDS workforce commensurate with
their efforts to serve persons living with epilepsy and the research community. We
also recommend additional resources and support for the NINDS workforce.
- Enhance efforts to incorporate training and inclusion of biostatisticians,
epidemiologists and outcome-based researchers to the neuroscience workforce. This
might be achieved through funding of core facilities with experts to advise on
research design or through direct training/recruitment efforts to bring them into
neuroscience field.
The AES remains concerned that access to state-of-the-art treatments and subsequent
outcomes are not uniformly available to patients with epilepsy and their families. Access to
care varies across factors such as race, ethnicity, socioeconomic status, geographic location,
and payer source. We place high priority on research that measures seizure outcomes and
quality of life that evaluates differences in terms of
- access to specialized care
- use and reimbursement for telemedicine
- certification for (or lack of) of specialized technical services
- care across the age spectrum. Discovery and implementation of optimal
interventions in childhood may change outcomes throughout a person’s lifetime.