AB 1648 directs the California Department of Public Health (CDPH) to establish the California Epilepsy Program to conduct epidemiological assessments of epilepsy and seizures across the state. The bill authorizes CDPH to assemble an expert advisory panel, to contract with local or nonprofit entities to collect and collate data, and to seek and spend appropriations, grants, or donations to support program activities.
The law also requires CDPH to analyze available data, publish reports online, and maintain a web-based directory of public agencies (and optionally private entities) that provide services to people affected by epilepsy. For public health planners, researchers, and advocacy organizations, the bill creates a formal state mechanism to centralize data and visibility around epilepsy—while leaving key choices about funding, data sources, and contracting to the department.
At a Glance
What It Does
Establishes a statewide California Epilepsy Program to assess incidence and prevalence of epilepsy and seizures, allows the department to accept and spend public or private funds, and authorizes contracting with local health agencies or nonprofits for data collection and collation. It also requires public reporting and a services directory on the department's website.
Who It Affects
The Department of Public Health, local and multicounty health departments, health systems agencies, nonprofit professional associations, clinical researchers, epilepsy advocacy groups, and Californians with epilepsy and their caregivers.
Why It Matters
This creates centralized surveillance and a public resource inventory where none existed in statute, potentially improving planning, research, and service navigation. Implementation choices—data sources, contracting partners, and funding strategy—will determine how comprehensive and sustainable the effort becomes.
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What This Bill Actually Does
The bill defines epilepsy broadly—covering one or more unprovoked seizures or a diagnosed epilepsy syndrome—and then directs CDPH to build a program that measures how often epilepsy and seizures occur and how common they are across California. Rather than mandating new reporting by clinicians, the program is structured to work with existing data where available and to contract for data collection and collation when needed.
CDPH can solicit and use appropriations, grants, and private donations to run the program and may enter contracts with entities such as health systems agencies, single- or multicounty health departments, or nonprofit professional associations to gather the data. The statute requires CDPH to convene an advisory panel made up of clinicians, researchers, advocates, and others with relevant expertise to advise on implementing the program.Once CDPH has analyzed the available incidence and prevalence information, the department must publish reports on its website 'as necessary' and maintain an online listing of public agencies that offer services to people affected by epilepsy—explicitly including Medi‑Cal, regional centers, and the Department of Education—and it may also list private service providers.
The bill leaves the department discretion over scope (limited to areas with available data), funding sources, contracting arrangements, and the level of public reporting detail.
The Five Things You Need to Know
The bill defines 'epilepsy' as one or more unprovoked seizures or a diagnosed epilepsy syndrome (Section 103872).
CDPH may seek, receive, and spend public appropriations, grants, or private donations to operate the California Epilepsy Program (Section 103872.1(b)).
The department may contract with health systems agencies, single-county or multicounty health departments, or nonprofit professional associations to collect and collate incidence and prevalence data (Section 103872.1(d)).
CDPH must analyze available data and publish reports on its website 'as necessary' (Section 103872.1(e)).
The department must publish an online listing of public agencies that offer epilepsy-related services (explicitly naming Medi‑Cal, regional centers, and the Department of Education) and may include private entities (Section 103872.1(f)).
Section-by-Section Breakdown
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Statutory definition of 'epilepsy'
This short provision sets the working definition the program will use: epilepsy includes one or more unprovoked seizures or a diagnosed epilepsy syndrome. That choice matters for surveillance scope because it determines which diagnostic codes and clinical records the department and its contractors will target when identifying cases.
Program establishment and geographic scope
CDPH must establish the California Epilepsy Program to conduct epidemiological assessments of incidence and prevalence. The statute limits active surveillance to 'any area of the state for which epilepsy and seizure incidence or prevalence data are available,' which signals a reliance on existing datasets and contractual collection rather than creating a universal, mandatory reporting system.
Funding authority and contracting for data collection
The department may accept appropriations, grants, and private donations and may spend those funds on program activities. CDPH is authorized to contract with a range of entities—health systems agencies, single- and multicounty health departments, multicounty groupings, or nonprofit professional associations—to collect and collate data. Practically, this gives CDPH flexibility to patch together surveillance using available public health infrastructure and third-party vendors, but it leaves funding levels and contracting terms to later decisions.
Advisory panel composition and role
The bill requires CDPH to convene an advisory panel of medical professionals with epilepsy expertise, researchers, advocates, and other relevant stakeholders to advise on program implementation. The provision creates a formal consultative structure but does not specify panel size, appointment mechanisms, conflict-of-interest rules, or transparency obligations—leaving those operational choices to the department.
Data analysis, public reporting, and services directory
CDPH must analyze available incidence and prevalence data and publish reports on its website 'as necessary.' The department must also publish an online list of public agencies offering services to people with epilepsy (naming Medi‑Cal, regional centers, and the Department of Education) and may include private providers. The statutory language mandates public visibility but leaves format, frequency, and inclusion criteria undefined.
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Explore Healthcare in Codify Search →Who Benefits and Who Bears the Cost
Every bill creates winners and losers. Here's who stands to gain and who bears the cost.
Who Benefits
- People with epilepsy and their caregivers—gain a centralized public resource directory and state-level reporting that can improve service navigation and reveal geographic gaps in care.
- Clinical and public health researchers—benefit from aggregated incidence and prevalence data and department reports that can support epidemiologic studies and grant applications.
- State and local public health planners—receive better situational awareness to inform program planning, resource allocation, and targeted interventions where data exist.
- Epilepsy advocacy organizations—obtain a formal advisory role and greater visibility for services, helping them influence program priorities and outreach.
- Regional centers and educational agencies—may see increased referrals and clearer statewide recognition of their services through the department’s published listing.
Who Bears the Cost
- California Department of Public Health—will need staff time and technical capacity to run the program, manage contracts, analyze data, and maintain public reporting even if funded through grants or donations.
- Local health departments and health systems agencies contracted for data collection—face operational costs to extract, standardize, and transmit data, and may need technical assistance or new workflows.
- Nonprofit professional associations or vendors performing contracted work—will absorb implementation costs and administrative burdens unless contracts fully reimburse them.
- Counties and smaller providers in data-poor areas—may incur new participation costs to close surveillance gaps and may require state support to comply.
- Private funding sources—while not a direct 'cost,' reliance on donations or grants can create expectations about program priorities and reporting that recipients must manage.
Key Issues
The Core Tension
The central dilemma is between creating useful, timely epilepsy surveillance and preserving flexibility to avoid burdensome mandates: the bill prioritizes a flexible, contracted, and potentially privately funded model that makes a program feasible without new appropriations, but that flexibility risks inconsistent data quality, sustainability, and potential influence from funding sources—trading comprehensive, standardized surveillance for an easier-to-launch but piecemeal system.
The statute establishes authority but leaves several implementation levers undefined. It does not create mandatory clinical or laboratory reporting, so comprehensive case ascertainment depends on CDPH’s ability to identify and contract for usable data sources (claims, hospital records, registries) and on existing data coverage across counties.
That approach reduces immediate regulatory burden but risks producing patchy or non-comparable surveillance across the state.
The bill authorizes acceptance of private funds but includes no safeguards about donor influence, disclosure, or procurement rules tied to private financing. Contracting authority is broad, yet the statute omits specifications for data standards, privacy safeguards beyond existing law, cost reimbursement, or performance metrics.
The services directory requirement increases visibility for programs but does not require vetting criteria, leaving questions about accuracy, inclusion standards, and liability if listings are incomplete or out of date.
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