· Executive Brief
National Epilepsy Awareness Month 2026
Use the observance to review how people find information, enter the right route, and remain connected through follow-through.
Leadership signal
Recognition becomes useful when leaders inspect the real route.
The strongest use of the observance is operational. Map where questions enter, how requests move, when ownership changes, and how unresolved work becomes visible. The goal is not to make a clinical claim. It is to make the organization’s response easier to understand and manage.
Start by distinguishing what is known from what the organization still needs to learn. A campaign plan, communication volume, or meeting count does not establish that a route is usable. Leaders need direct listening, clear ownership, locally defined measures, and a method for keeping exceptions visible.
Executive opening
Epilepsy care is a test of how a health system connects
National Epilepsy Awareness Month gives health-system leaders a useful lens. Recent evidence treats epilepsy less as one clinical service and more as a test of how emergency, primary, specialty and community care connect. When those connections fail, the signal appears in repeat emergency visits and in long delays to drug-resistant epilepsy diagnosis and surgery.[12][15]
The scale is easy to underestimate, and much of it sits outside any single clinic’s view. Across four U.S. states, researchers identified 200,962 adults who visited the emergency department for seizure or epilepsy between 2016 and 2018.[12] National survey data estimated 4.5 million U.S. adults with epilepsy, with annual healthcare spending of $21.3 billion for that group.[13] Another 6.6 million adults had unclassified seizures, with spending of $38.9 billion.[13]
The delays are long as well as costly. In one U.S. surgical cohort of 185 patients, the median interval from epilepsy diagnosis to surgery was 16.7 years.[15] In a 2025 cohort of 507 children across 3 European centers, a shorter time from diagnosis to epilepsy surgery was associated with better seizure outcomes.[14] These are intervals that executives can measure, own and shorten. They are also intervals that rarely appear on an enterprise dashboard, because they cross service lines, sites and sometimes organizations.
This brief adds an evidence base to the operating guidance already on this page. It looks at where people with seizures enter care, where they wait and where handoffs between services weaken. It draws on U.S. studies and on studies from low-resource settings, because both describe the same failure points in different forms.[5][8] The aim is better routes and better measurement, not individual clinical advice. Each section closes with the operating question a leadership team can take into its next review, from emergency follow-up to school coordination.
Current evidence
What the research says about burden, delay and missed signals
Emergency departments carry much of the load, and the load is uneven. The clearest U.S. data come from linked emergency records that follow the same patients across visits. Compared with private insurance, adults with Medicaid had an adjusted odds ratio of 2.01 for frequent seizure-related emergency visits, and adults with Medicare had 1.90.[12] Uninsured adults had an adjusted odds ratio of 1.55.[12] Residents of the lowest-income zip codes also had higher odds of frequent visits, with an adjusted odds ratio of 1.65.[12]
Frequent emergency use rarely opens the door to specialty diagnosis. Among 28,598 patients with frequent seizure-related emergency visits in the same four states, only 458, or 1.6%, received inpatient video-EEG monitoring.[1] Uninsured patients had an adjusted odds ratio of 0.37 for receiving it, and patients in the lowest-income zip codes had 0.48.[1] Living in or next to a county with an accredited epilepsy center raised the odds, with adjusted odds ratios of 1.75 and 1.80.[1]
Missed signals may appear well before a diagnosis. A study across 11 states identified 57,547 adults with a first-time seizure.[10] Emergency visits for falls were more common in the week before the seizure visit, with an odds ratio of 2.6.[10] In analyses limited to first-time status epilepticus, that odds ratio was 4.5.[10] The association persisted for up to 22 weeks before the seizure.[10] The authors describe these falls as potentially missed opportunities for earlier evaluation and note that prospective studies are still needed.[10]
Diagnostic uncertainty carries its own cost. Adults with unclassified seizures had 38% greater healthcare utilization and $1362 higher average marginal spending per person than adults with epilepsy.[13] They also had significantly higher rates of hospitalization and emergency visits.[13] The authors link these patterns to diagnostic uncertainty and care fragmentation, which places the problem squarely in operations.[13]
Rural residence adds another layer of risk. In 841,445 epilepsy admissions in nationally representative inpatient data covering 2016 to 2021, patients from the most rural counties had an odds ratio of 1.93 for in-hospital mortality.[3] The authors describe this as nearly double the odds, and they note that residual confounding remains possible in observational data.[3] Read together, these studies show a system that sees people with seizures often but connects them to definitive care rarely and unevenly.
Figure 1
Across settings, the gap between need and sustained care is wide
Percent of people or visits, as reported in each study. Values are copied from the cited studies [1], [2], [5], [8], [11]; none is estimated.
Data note. These values come from different studies, countries, populations and definitions, so this is an indirect comparison; each bar shows a separate leak in the care pathway, not a ranking.
Limitation. Each value reflects its own setting and denominator; the U.S. values describe emergency users and clinicians, while the international values describe community populations and one hospital.
Figure data (5 rows)
| Measure | Value | Population, setting and year as reported | Source |
|---|---|---|---|
| Frequent emergency users who received inpatient video-EEG monitoring | 1.6% | 458 of 28,598 patients with frequent seizure-related emergency visits, four U.S. states, 2016 to 2018 | [1] |
| Untreated patients offered free medication still in care at one year | 18.1% | 17 of 94 patients, community study in rural Gujarat, India | [8] |
| Emergency visits due to unavailable outpatient antiseizure medication | 31% | Public hospital in Bogotá, Colombia, March to May 2024, during a national shortage (6.5% in 2023) | [11] |
| Clinicians placing no routine neurodevelopmental referral for all children with early life epilepsy | 39% | 52 survey respondents from a U.S. pediatric epilepsy research consortium, 2023 | [2] |
| Epilepsy treatment gap | 70% | Population-based study in rural and peri-urban districts of Ghana, 2023 | [5] |
Continuum of care
Where the route to specialty and surgical care slows down
The longest delays sit between a first diagnosis and the recognition that treatment is not working. In a level 4 epilepsy center cohort in the U.S. Intermountain West, the median interval from epilepsy diagnosis to drug-resistant epilepsy diagnosis was 10.1 years.[15] The median interval from drug-resistant diagnosis to surgery was 1.4 years.[15] Most of the elapsed time came before drug-resistant epilepsy was recognized, not after.[15]
The same study found that public health insurance and shorter travel distance to the center were both predictive of delays.[15] The distance finding runs against intuition, and it suggests that proximity alone does not guarantee timely referral. Leaders should treat referral timing as a process to measure, not a matter of geography. A practical starting point is the date drug-resistant epilepsy is first documented and the date a surgical evaluation referral is placed.
Pediatric programs face a different bottleneck between evaluation and surgery. In the European pediatric surgery cohort, earlier drug resistance and an MR-visible lesion were associated with shorter times to referral and surgery.[14] Many patients were initially considered MRI-negative at the referring center.[14] That interval spans testing, case review, scheduling and family decisions, so no single department owns it. Pediatric service lines can measure it from referral, testing and operating room records, and review long-duration cases to find which steps add delay.
Early childhood creates a further handoff that is often skipped. In a survey of 52 clinicians from a pediatric epilepsy research consortium, no respondent chose neuropsychological evaluation as a routine referral for all children with early life epilepsy.[2] Over one-third, or 39%, placed no routine neurodevelopmental referrals for all such children, while 59% routinely referred to early intervention.[2] The authors call for standardized recommendations, which gives pediatric service lines a clear design question.[2] Neurodevelopmental referrals increased when developmental delays were already known, which leaves children without recognized delays dependent on individual clinician practice.[2]
Together these findings describe one continuum problem with three expressions: late recognition, slow evaluation and missing developmental referral. Each can be measured from data most health systems already hold, including diagnosis dates, referral orders and scheduling records. Each also needs a named owner across the boundary between neurology, primary care, pediatrics and surgery. The same logic applies when adolescents move from pediatric to adult services, a handoff these studies did not measure directly.
Figure 3
Why the pathway breaks
People
- Too few epileptologists and EEG technologists outside major centers
- Primary care and emergency clinicians without decision support
- Teachers and community staff not trained to recognize seizures
Process
- No defined route from emergency discharge to outpatient neurology
- Late recognition of drug-resistant epilepsy and delayed surgical referral
- Developmental and neuropsychological referral not standardized in early childhood
Technology
- Falls and prior emergency visits not flagged as possible missed seizures
- Presurgical evaluation steps not tracked across sites
- No shared view of medication supply for epilepsy patients
Environment
- Rural residence and distance from accredited epilepsy centers
- Low-income neighborhoods with heavier emergency reliance
- Beliefs and stigma that discourage starting or continuing treatment
Policy
- Uninsured and publicly insured patients less likely to reach monitoring
- Outpatient antiseizure medication shortages
- Referral agreements absent where no comprehensive center exists
Measurement
- Emergency visits counted, not completed specialist follow-up
- Results not stratified by insurance, income, race or rurality
- Referral and evaluation intervals not measured
Unranked qualitative cause-and-effect diagram for the outcome in the box: People with seizures cycle through emergency care without timely specialist diagnosis, surgical evaluation or sustained treatment Causes are assembled from the cited literature [1], [2], [3], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15]; categories are not weighted and their order carries no meaning.
Data note. Qualitative; no frequencies are implied.
Limitation. Causes drawn from published studies may not all apply locally; validate them with frontline teams.
Figure data (6 rows)
| Category | Causes drawn from the cited literature |
|---|---|
| People | Too few epileptologists and EEG technologists outside major centers; Primary care and emergency clinicians without decision support; Teachers and community staff not trained to recognize seizures |
| Process | No defined route from emergency discharge to outpatient neurology; Late recognition of drug-resistant epilepsy and delayed surgical referral; Developmental and neuropsychological referral not standardized in early childhood |
| Technology | Falls and prior emergency visits not flagged as possible missed seizures; Presurgical evaluation steps not tracked across sites; No shared view of medication supply for epilepsy patients |
| Environment | Rural residence and distance from accredited epilepsy centers; Low-income neighborhoods with heavier emergency reliance; Beliefs and stigma that discourage starting or continuing treatment |
| Policy | Uninsured and publicly insured patients less likely to reach monitoring; Outpatient antiseizure medication shortages; Referral agreements absent where no comprehensive center exists |
| Measurement | Emergency visits counted, not completed specialist follow-up; Results not stratified by insurance, income, race or rurality; Referral and evaluation intervals not measured |
Access
Access depends on supply, a reliable first door and specialist reach
Access begins with something as basic as a continuous medication supply. In a public hospital in Bogotá, Colombia, emergency visits due to unavailable outpatient antiseizure medication rose from 6.5% in 2023 to 31% during a 2024 national shortage.[11] Sixty-one admissions were directly related to lack of outpatient medication, 7 in 2023 and 54 in 2024.[11] The authors associated the shortage with greater hospital burden and an increased risk of seizure clusters.[11]
U.S. pharmacy and supply leaders can read that study as a stress test. A gap in outpatient supply did not stay in the pharmacy; it appeared at the emergency department door.[11] Monitoring medication availability for people with epilepsy therefore belongs in supply chain governance, not only in clinic workflow. Pharmacy, ambulatory and emergency leaders should share one view of shortage alerts and seizure-related visit trends.
The emergency department is often the first door, but it is not yet a reliable bridge. A national expenditure study notes that improved follow-up and clearer diagnostic pathways after emergency visits for unclassified seizures may help reduce use and costs.[13] Falls that bring adults to the emergency department in the weeks before a first seizure are another possible entry point for earlier evaluation.[10] Both findings argue for a defined route from emergency care to outpatient neurology, rather than discharge with a general instruction to follow up.
Specialist reach shapes who receives advanced diagnosis. The odds of inpatient video-EEG monitoring rose for patients living in or next to a county with an accredited epilepsy center.[1] Rural patients face a sharper version of this gap, with nearly double the odds of in-hospital mortality in the most rural counties.[3] Referral agreements, telehealth and outreach clinics are the operating levers available to systems without their own comprehensive epilepsy centers. Each lever works only if a named team tracks whether referred patients actually arrive.
Access measures should therefore follow the person, not the visit. Leaders can ask how many patients with repeat seizure-related emergency visits complete a specialist appointment, and how long that takes. Visit counts alone can rise or fall without telling leaders whether anyone reached definitive care. They can ask the same question by insurance, income and rurality, since each was associated with access or outcomes in the studies above.[1][3][12]
Executive guidance · System route
Map the path from first contact to verified follow-through.
Use this route as a discussion framework. Replace each stage with the organization’s approved process, qualified roles, current service capacity, and applicable requirements. Do not infer a clinical protocol from the observance title.
The route at a glance
- Listen
- Clarify entry
- Support complex navigation
- Protect transitions
- Verify and learn
Reliability rule: Every stage needs a named owner, an observable status, an approved escalation path, and a defined signal that shows whether responsibility moved or remained unresolved.
Listen
Gather questions and friction points from people using the route, frontline teams, and community-facing staff. Separate observed barriers from assumptions.
Clarify entry
Publish a plain-language first step and identify who receives requests through each approved channel.
Support complex navigation
Make contact options, receiving services, communication support, transition status, and follow-through visible without assuming one experience or route.
Protect transitions
Use acknowledgment and status visibility when responsibility moves between services, locations, or organizations.
Verify and learn
Review unresolved work, repeat contacts, and avoidable handoffs. Use the findings to improve the route rather than blame individuals.
Figure 2
The system route as one flow
The five stages of the system route described in this brief, drawn as one flow with a learning loop back to the start. The stages are the page’s original executive guidance, not a clinical protocol.
Data note. Shows sequence and handoffs only; it carries no counts or rates.
Limitation. Local processes may add, merge or reorder stages under organizational policy.
Figure data (5 rows)
| Stage | What the stage requires |
|---|---|
| Listen | Gather questions and friction points from people using the route, frontline teams, and community-facing staff. Separate observed barriers from assumptions. |
| Clarify entry | Publish a plain-language first step and identify who receives requests through each approved channel. |
| Support complex navigation | Make contact options, receiving services, communication support, transition status, and follow-through visible without assuming one experience or route. |
| Protect transitions | Use acknowledgment and status visibility when responsibility moves between services, locations, or organizations. |
| Verify and learn | Review unresolved work, repeat contacts, and avoidable handoffs. Use the findings to improve the route rather than blame individuals. |
Equity and trust
Equity and trust: who stays in the emergency loop
The equity pattern is consistent across the U.S. studies: insurance and income predict both heavier emergency use and lower access to diagnostic monitoring.[1][12] Uninsured adults were more likely to be frequent emergency users, yet uninsured frequent users were less likely to receive video-EEG monitoring.[1][12] That combination describes a loop in which the same patients return to acute care without reaching the service that could clarify their diagnosis.
Race appears in the data, but not always where expected. Black patients had 60% higher odds of frequent emergency visits than White patients, with an adjusted odds ratio of 1.60.[12] That disparity was attenuated for Black patients with Medicare and Medicaid compared with private insurance.[12] Among frequent emergency users, no significant association was found between race or ethnicity and receipt of video-EEG monitoring.[1] Equity reviews should stratify by insurance and income as well as race, so the real driver of a gap is visible.
Rural disparities follow a similar structural logic. When the analysis was limited to privately insured patients, the associations between rurality and mortality, status epilepticus at presentation and prolonged length of stay were no longer observed.[3] The authors suggest that modifiable structural barriers, rather than geography alone, drive rural-urban disparities.[3] For health systems, that conclusion moves rural epilepsy outcomes from the category of fate into the category of design. Coverage navigation, transport support and remote specialist access are all design choices within executive control.
Some inequities are less visible because they surface outside the clinic. In national U.S. survey data, children with epilepsy had an adjusted odds ratio of 7.3 for subjective memory, concentration or decision-making difficulty compared with other children.[4] The authors also found memory and executive difficulties more common among people with epilepsy who had sleep problems.[4] That makes school coordination and developmental follow-up an equity issue as well as a clinical one.[2][4]
Trust is the other half of equity. In a large rural community study, the authors concluded that improving medication access alone is unlikely to substantially reduce the treatment gap.[8] Equity work should include listening to patients and families about how they understand seizures and what they expect from care. It should also ask whether interpreters, transportation and caregiver time are available at the points where epilepsy care most often breaks down.
Human infrastructure
Human infrastructure: extending scarce expertise
Epilepsy expertise is scarce, and the strongest designs extend it rather than wait for more of it. In an Indian school health program, a three-tier cascade trained 1994 teachers, or 82%, across 398 schools, reaching 96% of schools.[9] Community health workers were reached as well, including 88% of accredited social health activists and 86% of Anganwadi workers.[9] The program added no specialist resources.[9] Instead, it used staff already in place, with mobile health teams from the national school health program training primary care providers, community health workers and government school teachers.[9]
The results suggest what a trained front line can find. Epilepsy detection rose from 56 to 129 per 100,000 screened children, a rate ratio of 2.3.[9] Against district prevalence, detection efficiency improved from 15.7% to 36.5%.[9] The authors caution that the pandemic may have confounded the comparison, and they describe the higher share of treatment-naive children after the intervention as consistent with, not proof of, reaching missed cases.[9]
Decision support is another way to extend expertise. A study in rural primary care in Chhattisgarh, India, tested a smartphone decision-support application.[6] Doctors using it reached full treatment agreement with a specialist in 71% of cases, compared with 48% for epilepsy-trained doctors without it.[6] Diagnostic agreement was 91% and 86%, and none of the differences reached statistical significance.[6] The study supports feasibility rather than benefit, and evaluable samples were small at 33 and 29 patients.[6]
Regional capacity building shows what sustained expert support can do. A survey of 115 hospitals assisted by a national initiative in China found that 54, or 47.0%, had formal epilepsy centers, and 43 of those were established after joining.[7] EEG technician certifications accelerated by 10.2% per year after the intervention.[7] Among 101 hospitals reporting a decline in unauthorized therapies, the median decline was 15%.[7] Over 90% of expert respondents reported gains in clinical competence and professional fulfillment, a reminder that mentoring roles can strengthen the mentors as well.[7]
For U.S. executives, the lesson is about structure. Hub-and-spoke epilepsy networks, credentialing pathways for EEG technologists and decision support for primary care and emergency clinicians are all forms of human infrastructure. Each needs a workload plan, a training owner and a measure of whether expertise actually reaches the patients who need it. School nurses, care navigators and pharmacists belong in the same plan, since they often hold the handoff between visits.
Executive guidance · Operating dashboard
Measure whether the operating route works as intended.
Do not publish a number until the organization defines its numerator, denominator where relevant, owner, source system, exclusions, review cadence, and limits. The candidates below are management prompts, not benchmarks or reported results.
Four operating signals
Each signal pairs an executive question with one candidate local measure, set out below.
Executive guidance · Signal
Entry-point clarity
Can people and staff identify the approved first step without searching across conflicting instructions?
- Candidate local measure
- Locally defined contact, routing, and repeat-contact signals by channel and service.
Executive guidance · Signal
Ownership reliability
Does a specific team accept each request and make its status visible?
- Candidate local measure
- Requests without an owner, aged work, transfers, and escalations using locally approved definitions.
Executive guidance · Signal
Navigation and communication
Can people and support networks understand who owns the next step and how to raise an unresolved barrier?
- Candidate local measure
- Locally defined communication barriers, repeated contacts, transition acceptance, support requests, and route completion.
Executive guidance · Signal
Improvement closure
Does the organization correct recurring friction and report what changed?
- Candidate local measure
- Selected barriers, assigned actions, completion status, and post-change review.
Figure 4
The operating system behind the dashboard
The four operating signals from this brief’s dashboard, each tied to the candidate owner named in the executive scorecard, around one accountable route. Drawn from the page’s original executive guidance.
Data note. Structural diagram; no measured values.
Limitation. Owners are candidates to be confirmed locally.
Figure data (4 rows)
| Operating signal | Candidate owner |
|---|---|
| Entry-point clarity | Executive sponsor and operational lead |
| Ownership reliability | Operational owner and participating teams |
| Navigation and communication | Sending and receiving owners |
| Improvement closure | Improvement owner and executive sponsor |
Executive guidance · Handoff workflow
Keep work owned when it crosses a boundary.
A handoff is reliable only when the sending party knows who is expected to receive the work, the receiving party acknowledges responsibility, and any unresolved exception remains visible. Local policy and qualified judgment control the actual process.
How responsibility moves
Lane A
From message to accepted ownership
- Confirm the approved message and intended audience.
- Publish the actual entry point and receiving role.
- Acknowledge receipt using the locally approved method.
- Escalate when ownership or response remains unclear.
Lane B
From accepted ownership to verified follow-through
- Record the next accountable owner and visible status.
- State the next owner, approved communication channel, and unresolved status in a form the receiving team can use.
- Keep unresolved work visible across boundaries.
- Confirm closure or document the continuing exception.
Executive guidance · Executive scorecard
Ask questions that connect intent, ownership, and results.
The scorecard keeps review focused on decisions. Leaders should set definitions locally, examine variation without overclaiming cause, and pair quantitative signals with the experience of people who use and operate the route.
Who reviews what
- Executive sponsor and operational lead
- Operational owner and participating teams
- Sending and receiving owners
- Improvement owner and executive sponsor
Candidate owners named in the scorecard, confirmed locally.
| Operating signal | Executive question | Candidate owner | Suggested review point |
|---|---|---|---|
| Entry-point clarity | Can people and staff identify the approved first step without searching across conflicting instructions? | Executive sponsor and operational lead | At campaign launch and close |
| Ownership reliability | Does a specific team accept each request and make its status visible? | Operational owner and participating teams | At a locally defined cadence |
| Navigation and communication | Can people and support networks understand who owns the next step and how to raise an unresolved barrier? | Sending and receiving owners | At a locally defined cadence |
| Improvement closure | Does the organization correct recurring friction and report what changed? | Improvement owner and executive sponsor | Until action is verified |
Figure 5
Control points for a reliable epilepsy care pathway
| Control point | Risk if missing | Owner | Evidence of control |
|---|---|---|---|
| Defined route from seizure-related emergency visit to outpatient neurology | Repeat emergency visits without specialist diagnosis | Emergency medicine and neurology service line leaders | Share of repeat emergency users with a completed specialist visit, and days to that visit |
| Referral access to video-EEG monitoring for frequent emergency users | Uninsured and low-income patients rarely reach monitoring | Neurology service line director with access and managed care leaders | Monitoring referrals among frequent users, stratified by insurance and income |
| Timely recognition and surgical referral for drug-resistant epilepsy | Years of delay before surgical evaluation | Chief medical officer and epilepsy program director | Interval from drug-resistant diagnosis to surgical evaluation referral |
| Tracked presurgical evaluation steps | Evaluations stall with wide variation between sites | Epilepsy surgery program manager | Median and spread of evaluation duration by step and site |
| Pediatric developmental referral and school coordination | Neurodevelopmental needs go unaddressed in early childhood and school | Pediatric neurology lead with school health partners | Share of children with a documented developmental referral and school plan contact |
| Antiseizure medication supply monitoring | Outpatient shortages surface as emergency visits | Chief pharmacy officer and supply chain lead | Shortage alerts reviewed with emergency visit trends for epilepsy patients |
| Equity-stratified review of epilepsy measures | Insurance, income and rural gaps stay hidden | Chief health equity officer and board quality committee | Quarterly report stratified by insurance, income, race and rurality |
Control points derived from the cited evidence [1], [2], [3], [9], [11], [12], [14], [15] and this brief’s executive guidance.
Data note. Each row is a control to verify, not a measured result.
Limitation. Owners and evidence of control must follow local policy and applicable requirements.
Public communication
Public communication: from awareness to treatment that lasts
Awareness campaigns matter because beliefs shape whether treatment begins. In a door-to-door survey of 130,509 people in 96 villages in rural Gujarat, India, 247 of 371 people with active epilepsy and treatment data, or 66.6%, had a treatment gap.[8] Lack of awareness and low perceived need accounted for 56% of reasons for never starting medication.[8] Financial and access barriers accounted for only 19% of reported reasons.[8]
Continuation is as fragile as initiation, and it depends on what patients believe treatment is for. Perceived cure was the leading reason for stopping medication, at 35% of secondary treatment gaps.[8] When untreated patients were offered free medication, only 32 of 94, or 34.0%, remained in care at 3 months, and 17, or 18.1%, at one year.[8] For communicators, the lesson is that removing cost does not by itself sustain engagement.[8]
Stigma and misconception remain part of the picture. In rural and peri-urban districts of Ghana, a population study found a 70% treatment gap, with only 30% of people with a confirmed diagnosis using antiseizure medication.[5] Among untreated people, the most common reason was a lack of diagnostic awareness, at 37.8%.[5] Some 36.8% of respondents attributed epilepsy to witchcraft or other supernatural forces.[5] Barriers also included stigma, preference for alternative medicine, cost and medication shortages.[5]
U.S. communities differ from these settings, but the communication lesson travels. Trusted messengers, such as teachers trained to recognize epilepsy, give first aid and refer children, can carry accurate information into daily life.[9] Messages for National Epilepsy Awareness Month should point to approved seizure recognition and first aid resources, explain why follow-up matters and show how to reach the right service. They should use plain language that families and school staff can act on. Campaign teams should test messages with patients, caregivers and community partners before launch, and confirm that every phone number and link reaches a staffed service.
Measurement closes the loop. Communication teams can track whether outreach is followed by more completed neurology appointments, fewer repeat emergency visits and more school coordination requests, rather than counting impressions alone. Those measures connect public communication to the operating results the rest of this page describes. They also give the board a way to judge whether the observance changed anything after November ends.
Executive guidance · 90-day plan
Move from listening to a verified improvement in 90 days.
The time boxes below are a management framework, not a clinical timeline. Adjust them to risk, scope, governance, resources, stakeholder participation, and applicable review requirements.
Ninety days, three moves
- Days 1–30See the current route
- Days 31–60Build the reliable path
- Days 61–90Make the change visible
Days 1–30 · Listen and map
See the current route
- Name an executive sponsor and an operational owner.
- Listen to people using the route and representative frontline teams.
- Map how National Epilepsy Awareness Month communications connect to real entry points, owners, transitions, and escalation.
- Select one recurring barrier that the organization can responsibly address.
Days 31–60 · Design and test
Build the reliable path
- Define the trigger, receiving owner, required information, acknowledgment, escalation, and closure signal.
- Validate the design with every sending and receiving team involved.
- Validate one complex navigation handoff with people using and operating the route, then correct a barrier.
- Test the route in more than one representative setting or operating period where practical.
Days 61–90 · Implement and verify
Make the change visible
- Launch the redesigned route with a small set of locally defined measures.
- Review unresolved work and recurring friction using a learning approach.
- Correct implementation barriers and record who owns each remaining dependency.
- Report what changed, what evidence was reviewed, and what still requires live oversight.
Figure 6
The 90-day plan on one timeline
The 90-day plan from this brief drawn as a timeline: each action sits in the 30-day window the plan assigns it. The full wording of each action is in the figure data and in the plan above.
Data note. Time boxes are a management framework, not a clinical timeline.
Limitation. Durations are uniform 30-day windows; real tasks may span windows.
Figure data (12 rows)
| Window | Action |
|---|---|
| Days 1–30 · Listen and map | Name an executive sponsor and an operational owner. |
| Days 1–30 · Listen and map | Listen to people using the route and representative frontline teams. |
| Days 1–30 · Listen and map | Map how National Epilepsy Awareness Month communications connect to real entry points, owners, transitions, and escalation. |
| Days 1–30 · Listen and map | Select one recurring barrier that the organization can responsibly address. |
| Days 31–60 · Design and test | Define the trigger, receiving owner, required information, acknowledgment, escalation, and closure signal. |
| Days 31–60 · Design and test | Validate the design with every sending and receiving team involved. |
| Days 31–60 · Design and test | Validate one complex navigation handoff with people using and operating the route, then correct a barrier. |
| Days 31–60 · Design and test | Test the route in more than one representative setting or operating period where practical. |
| Days 61–90 · Implement and verify | Launch the redesigned route with a small set of locally defined measures. |
| Days 61–90 · Implement and verify | Review unresolved work and recurring friction using a learning approach. |
| Days 61–90 · Implement and verify | Correct implementation barriers and record who owns each remaining dependency. |
| Days 61–90 · Implement and verify | Report what changed, what evidence was reviewed, and what still requires live oversight. |
Executive guidance · Leadership close
Carry one accountable improvement beyond the campaign window.
Recognition matters. It becomes durable when leaders also listen, clarify the route, support the people operating it, close an identified gap, and report the result without claiming more than the evidence supports.
Leadership commitment
Listen to the people closest to the route, assign one barrier, and verify the change.
Executive action kit · Month observance
Turn National Epilepsy Awareness Month into accountable action.
Use the observance to review how people find information, enter the right route, and remain connected through follow-through.
Leadership focus
Use this observance to examine navigation, longitudinal ownership, and specialty-care coordination. Select one verified barrier, assign an accountable owner, and carry the improvement beyond the campaign window.
Workforce lens
Ask whether staffing, role clarity, training, tools, workload, and escalation support the people operating the information, assessment navigation, support, and longitudinal follow-through pathway.
Patient and community lens
Make the approved first step clear. Test whether a person can move from information to an acknowledged next action without navigating conflicting instructions.
Equity and access lens
Review communication access, cognitive accessibility, caregiver burden, transportation, digital access, and geographic availability.
Five-minute briefing
Inspect the operating sequence
Listen with people using the pathway, caregivers, clinical teams, rehabilitation, and community supports. Find one fragmented information, a failed transition, or an unresolved support need, then test the locally approved route from entry through acknowledged follow-through.
- Listen
- Clarify entry
- Support complex navigation
- Protect transitions
- Verify and learn
Leadership actions for this week
- Name an executive sponsor and frontline operating owner.
- Ask people using and operating the pathway where ownership becomes unclear.
- Test one representative route from first question to acknowledged next step.
- Select one barrier that can be corrected without overstating the evidence.
- Set a review date and define how completion will be verified.
Candidate measures
Define every numerator, denominator where relevant, owner, data source, exclusions, cadence, and limitation locally. These are management prompts, not external benchmarks.
- Locally defined contact, routing, and repeat-contact signals by channel and service.
- Requests without an owner, aged work, transfers, and escalations using locally approved definitions.
- Locally defined communication barriers, repeated contacts, transition acceptance, support requests, and route completion.
Department readiness checklist
- The public and staff entry points match the actual approved process.
- A specific role accepts each request, referral, or escalation.
- Handoffs include acknowledgment and a visible unresolved state.
- Language, disability, digital, transportation, and trust barriers receive explicit review.
- Communications do not introduce unsupported themes, statistics, or clinical advice.
- A named leader will review what changed after the observance.
Intended audiences
- Executive and Operational Leaders
- Patient Experience and Access Leaders
Staff communication template
During National Epilepsy Awareness Month, our organization will connect awareness with a practical review of the information, assessment navigation, support, and longitudinal follow-through pathway. Use approved information, identify the correct entry point, confirm ownership when work moves, protect privacy, and escalate unresolved barriers through local channels.
Community communication template
National Epilepsy Awareness Month is an opportunity to share trustworthy information and make the next step easier to find. Use our approved channels for information and support. If a request changes hands, our goal is to keep ownership and follow-through visible.
Measurement worksheet
- Signal
- What observable condition will show whether the route works?
- Definition
- What is included, excluded, and counted?
- Owner
- Who reviews the signal and acts on exceptions?
- Cadence
- When will leaders review it?
- Equity check
- Which differences require protected, locally appropriate review?
- Closure
- What evidence will confirm the improvement was completed?
- Editorial review
- Completed
- Source records
- 2 listed under Authoritative resources
- Review standard
- Sourced facts remain separated from original executive guidance
- Clinical boundary
- No new statistical or clinical claim was added by this action kit
Sources and content boundary
Authoritative resources
Use note: All operating models, measures, scorecard questions, and action steps are original executive guidance. This article supports leadership planning and education. It does not replace clinical judgment, emergency procedures, legal advice, professional standards, organizational policy, or applicable federal, state, and local requirements.
Peer-reviewed references
References
Fifteen peer-reviewed sources, newest first. Each was individually verified through authenticated academic research databases. Bracketed numbers in the text link here; the original executive guidance on this page carries no citations because it is guidance, not a sourced claim. Sources last checked in those databases on .
- 1.Kozak C, Patel K, Jadav N, Parikh A, Gomes Coelho MD, Clement H, et al. Access to inpatient video-EEG monitoring for patients with frequent seizure-related emergency visits. Epilepsy Research. 2026;226:107858. https://doi.org/10.1016/j.eplepsyres.2026.107858
- 2.Eschbach K, Silveira L, Spelbrink EM, Wirrell E, Bhatia S, Bearden DJ, et al. Neuropsychological referral practices in early life epilepsy (ELE): A survey of the pediatric epilepsy research Consortium. Epilepsy & Behavior. 2026;177:110934. https://doi.org/10.1016/j.yebeh.2026.110934
- 3.Bader ER, Kemball-Cook WS, Benton JA, Killian NJ, Boro AD, Eskandar EN. Rural-Urban Disparities in Epilepsy Outcomes in the United States. Neurology. 2026;107(1):e218053. https://doi.org/10.1212/wnl.0000000000218053
- 4.Wallace DA, Pedersen NP, Drane DL. Epilepsy as a predictor of subjective memory and executive dysfunction in American children and adults, with sleep as a relevant factor. Epilepsy & Behavior. 2026;183:111139. https://doi.org/10.1016/j.yebeh.2026.111139
- 5.Darkwa EK, Adjei P, Asiamah S, Awini E, Sottie C, Godi A, et al. Barriers to epilepsy care: Measuring the treatment gap in rural and peri-urban districts in Ghana. PLOS ONE. 2026;21(8):e0355854. https://doi.org/10.1371/journal.pone.0355854
- 6.Ganjoo D, Tiwari HK, Sharma M, Bharadwaj N, Yadav S, Mishra S, et al. Feasibility, safety and preliminary effectiveness of an epilepsy treatment smartphone application in rural primary care: A two-arm prospective observational study from India. Epilepsy Research. 2026;228:107922. https://doi.org/10.1016/j.eplepsyres.2026.107922
- 7.Tai Y, Liu T, Wu X, Chen L, Chen Z, Peng J, et al. Impact of the Western China epilepsy initiative on epilepsy care capacity in underserved regions: a nationwide cross-sectional survey. Epilepsy & Behavior. 2026;185:111251. https://doi.org/10.1016/j.yebeh.2026.111251
- 8.Rathore C, Patel H, Baheti N, Bansal AR, Seth AK, Kataria L, et al. Treatment gap in epilepsy is predicted more by patient perceptions than disease burden: Population-based study from rural India. Epilepsia. 2026:epi.70471. https://doi.org/10.1002/epi.70471
- 9.Sulena S, Singh G, Nagar A, Padda P. A primary care-led school-centered model for epilepsy detection and care among children in India. Epilepsia Open. 2026:epi4.70346. https://doi.org/10.1002/epi4.70346
- 10.Wang AY, Wood AJ, Zhang C, Kamel H, Liberman AL, Guterman EL. Emergency Department Visits for Falls and First-Time Seizure. Neurology. 2026;107(9):e218597. https://doi.org/10.1212/wnl.0000000000218597
- 11.Espinosa-Jovel C, Tafur-Gómez N, Oliveros-Acuña N, Valencia-Enciso N, Horta J. Consequences of outpatient antiseizure medication shortages in the emergency department. Epileptic Disorders. 2026;28(3):826-831. https://doi.org/10.1002/epd2.70223
- 12.Kamitaki BK, Geller JE, Dai JH, Sarwadnya U, Alidoost L, Clement H, et al. Frequent seizure and epilepsy-related emergency department visits in the United States: A retrospective cohort study. Epilepsia. 2025;66(10):3822-3829. https://doi.org/10.1111/epi.18525
- 13.Rajadhyaksha PM, Suh K. Characterizing the burden of healthcare utilization and expenditure for epilepsy and unclassified seizures in the U.S., 2016–2022. Epilepsia Open. 2025;10(5):1648-1659. https://doi.org/10.1002/epi4.70135
- 14.Sanders MWCB, Ebel M, Chari A, Fleumer M, Vasilica AM, Eriksson MH, et al. What Determines the Timing of Epilepsy Surgery in Children With Cortical Malformations and Low-Grade Epilepsy-Associated Tumors?. Epilepsia Open. 2025;10(5):1345. https://doi.org/10.1002/epi4.70074
- 15.Campbell JM, Yost S, Gautam D, Herich A, Botros D, Slaughter M, et al. Delays in the diagnosis and surgical treatment of drug-resistant epilepsy: A cohort study. Epilepsia. 2024;65(5):1314-1321. https://doi.org/10.1111/epi.17944
Claim-to-source matrix
What each source supports
Every sourced claim in the new sections maps to the references that support it, the section where it is used, and the limitation a reader should keep in mind. Original executive guidance carries no sources because it is guidance, not a finding.
| Claim group | Sources | Years | Used in | Limitation |
|---|---|---|---|---|
| Frequent seizure-related emergency use and its insurance, income and race patterns | [12] | 2025 | Current evidence | Administrative data from four U.S. states, 2016 to 2018; associations, not causes; adults only. |
| Low receipt of inpatient video-EEG monitoring among frequent emergency users | [1] | 2026 | Current evidence | Same four-state administrative data; does not capture outpatient monitoring or clinical appropriateness. |
| Emergency visits for falls before a first-time seizure | [10] | 2026 | Current evidence | Case-crossover design using coded visits in 11 states; mechanisms not established; prospective studies needed. |
| Utilization and spending for epilepsy and unclassified seizures | [13] | 2025 | Current evidence | National survey data with self-reported conditions; matched comparison; cost estimates are modeled. |
| Rural-urban differences in inpatient epilepsy outcomes | [3] | 2026 | Equity and trust | Inpatient sample only; residual confounding and limited clinical detail acknowledged by the authors. |
| Delays to drug-resistant epilepsy diagnosis and surgery | [15] | 2024 | Continuum of care | Single center cohort of surgical patients; excludes people never referred. |
| Determinants of time to pediatric epilepsy surgery | [14] | 2025 | Continuum of care | Retrospective cohort of 507 children with cortical malformations or low-grade epilepsy-associated tumors who had surgery between 2010 and 2020 in 3 European centers. |
| Neurodevelopmental and neuropsychological referral in early life epilepsy | [2] | 2026 | Continuum of care | Clinician-stated practice from 52 survey respondents, mostly academic epileptologists. |
| Memory and concentration difficulty in children with epilepsy | [4] | 2026 | Equity and trust | Cross-sectional survey data with subjective, caregiver or self-reported measures. |
| Outpatient medication shortage and emergency visits | [11] | 2026 | Access | Single public hospital in Colombia; descriptive comparison of two three-month periods. |
| Decision-support application for rural primary care | [6] | 2026 | Human infrastructure | Small nonrandomized samples; differences not statistically significant. |
| Regional capacity building for epilepsy care | [7] | 2026 | Human infrastructure | Cross-sectional self-reported hospital survey; attribution to the initiative is uncertain. |
| School-centered detection and cascade training | [9] | 2026 | Human infrastructure | Before-after comparison with pandemic-related confounding; one district in India. |
| Perceptions, beliefs and the epilepsy treatment gap | [8] [5] | 2026 | Public communication | Community studies in rural India and Ghana; transfer to U.S. settings is indirect. |
About the author
Greg Wahlstrom
MBAHCM
President and Chief Executive Officer, The Healthcare Executive
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