Public Health Surveillance Programs

VI. Key Issues: Financing and Delivery >> A. Health Spending >> Health Cost Containment  >> Improve Administration >>  Health IT >> Governmental Health IT Initiatives >> Public Health Surveillance Programs (last updated 3.18.16)

Lead Editor: Dana Beezley-Smith, Ph.D. 

National Strategy for Biosurveillance (Obama Administration)

White House Announcement. (7.31.12) “In my National Security Strategy, I committed the United States to new approaches to counter biological threats. Specifically, I called for ‘obtaining timely and accurate insight on current and emerging risks.’ Such biosurveillance — including early detection — is one of our first lines of defense against these threats. As we saw during the H1N1 influenza pandemic of 2009, decisionmakers — from the President to local officials — need accurate and timely information in order to develop the effective responses that save lives. It calls for a coordinated approach that brings together Federal, State, local, and tribal governments; the private sector; nongovernmental organizations; and international partners. It challenges us to take full advantage of the advanced technologies, new vaccines, the latest science, and social media that can help keep our citizens safe. It describes the core functions and critical capabilities we need to succeed. As a next step, I am directing that a strategic implementation plan be completed within 120 days to lay out the specific actions that are required and the responsibilities of all partners in this mission.”

National Health Security Strategy (NHSS) and Implementation Plan

Office of the Assistant Secretary for Preparedness and Response

Analysis

  • Federal ‘Biosurveillance’ Plan Seeking Direct Access to Americans’ Private Medical Records. “Brase warns that the NHSS proposal would allow the federal government to monitor an individual’s behavior before, during and after any government-defined health ‘incident’ – which could be anything from a local outbreak of the flu to a terrorist anthrax attack. ‘It’s very broad. It doesn’t seem to have any limits, except they say something about, you know, properly protecting the data. But from our perspective, if the government gets access to this kind of data, [and] is allowed to do research with the data…then our privacy has already been compromised. The government has already said that our data is their data for their purposes of national health security,’ Brase told CNSNews.com. ‘It’s very clear to us that really the government is moving toward real-time access, toward close collaboration of government and doctors for ready access to the electronic medical record and then to conduct research and analysis.’” (CNS.com, 5.20.14)

Public Health Surveillance Under the CDC

Overview

Centers for Disease Control, Public Health Surveillance and Informatics Program Office (PHSIPO). Public health surveillance is described as “the ongoing systematic collection, analysis, and interpretation of health-related data essential to the planning, implementation, and evaluation of public health practice, closely integrated with the timely dissemination of these data to those who need to know.”
“PHSIPO is responsible for managing several large, national surveillance systems: the National Notifiable Diseases Surveillance System (NNDSS), BioSense 2.0, and the Behavioral Risk Factor Surveillance System (BRFSS). In addition, we provide informatics and information technology services that support surveillance and other public health work and activities. PHSIPO also serves as CDC’s resource for addressing cross-cutting issues in surveillance and informatics practice, such as supporting public health departments and CDC programs in achieving the population health benefits of expanded uses of electronic health records.”

Legislation and Funding 

PHSIPO’s core programs are authorized and funded through several legislative mandates and funding streams. BioSense is mandated through the Public Health Security and Bioterrorism Preparedness and Response Act of 2002, and biosurveillance coordination is mandated through the Homeland Security Presidential Directive 21 and the Pandemic and All-Hazards Preparedness Act of 2006; both BioSense and biosurveillance coordination are funded through the CDC preparedness budget line. Other major core programs are authorized under the Public Health Service Act and are funded through the CDC Public Health Scientific Services budget line.

Several projects within PHSIPO are funded through the Affordable Care Act’s Prevention and Public Health Fund, including additional BRFSS questions regarding access to healthcare and a pilot collaboration between a public health department and a health information exchange to explore the use of data for surveillance of preventive healthcare services.

Public Health Informatics 

“Public health informatics is the systematic application of computer science, technology, and information to public health practices, research, and learning.” Informatics is designed to create and maintain systems to facilitate communication and information transfer to support public health surveillance practices…Public health informatics and surveillance rely upon “the expanding use of electronic health records (EHRs) and personal health records in clinical practice, automated information management systems in laboratories, new methods and services for exchanging health information, and new information standards, strengthening information-sharing and collaboration between healthcare providers and public health officials.”

  • Public Health Surveillance and Informatics Program Office: FY 2013–2016 Strategic Plan. “The disciplines of public health surveillance—monitoring population health to inform public health policies and actions—and public health informatics—ensuring that information automation serves public health objectives—must be successfully integrated for them to realize their full potential. To this end, our mission is, simply, to advance the science and practice of public health surveillance and informatics. This mission is especially important given:
    • the population health objectives of the Affordable Care Act, which provide a renewed impetus to strengthen links between clinical and community health services;
    • growing use of electronic health records (EHRs) and automated information sharing among clinicians, laboratories, and public health agencies, which is being accelerated by the Department of Health and Human Services incentive program to advance the meaningful use of EHRs to improve both individual and population health;
    • changes in how people in the United States use telephones and the Internet to communicate with one another, which will continue to affect how we conduct population health surveys;
    • National Strategy for Biosurveillance, signed by the President in July 2012, which emphasizes the importance of both domestic and global vigilance and information sharing to detect, characterize, and anticipate emergent health threats;
    • rapidly expanding body of health and other information that is maintained electronically, which will require new tools to discern and display what is important and useful within these big data resources; and
    • growing stresses on the public health workforce, which heighten the importance of ensuring that information automation and new surveillance tools help them do their jobs better and make their jobs easier, not harder.”

CDC Policy on Identifiable Health Data

“CDC recommends that, unless there is a valid public health purpose (e.g., a longitudinal study that requires record linkage), programs should not collect nor maintain identifiable data…All release/sharing must be consistent with the confidentiality assurances under which the data were collected or obtained…Identifiable data that are maintained in certain systems of records may only be released in accordance with the Privacy Act which generally permits disclosing such data only with consent. However, the Privacy Act does permit data release without a subject’s consent under limited conditions. One example is a release that is compatible with the purpose for which the data were collected.”

The National Notifiable Diseases Surveillance System

The National Notifiable Diseases Surveillance System (NNDSS) affiliates “with state and local health departments; experts from other CDC programs; and partners, such as the Council of State and Territorial Epidemiologists (CSTE)” to provide interoperability between CDC, state and local health departments and health IT systems within hospitals, laboratories, and private health providers “to help them implement integrated and interoperable public health surveillance systems.  In an integrated system, a public health record is created to capture information about multiple occurrences of the same or different diseases in a given person over time.” CDC receives case notifications from 57 reporting jurisdictions.

Tools

  • The National Electronic Disease Surveillance System (NEDSS) facilitates electronic sharing of public health surveillance data from the healthcare system to public health departments. “Today, all 50 states and Washington, D.C., use a NEDSS-compatible system to send case notifications to NNDSS.” When states and territories voluntarily submit notifiable disease surveillance data electronically to CDC, they use data standards and electronic disease information systems and resources supported in part by NEDSS. “This ensures that state data shared with CDC are submitted quickly, securely and in an understandable form.”
  • The NEDSS Base System (NBS) provides reporting jurisdictions with a NEDSS-compatible information system to facilitate transferring health, laboratory, and clinical data and tools for processing, analysis, and sharing of data they receive.
  • Messaging and Vocabulary Services helps NEDSS to ensure that data from many sources (state and local health departments, hospitals, private health providers, and labs) contain standard content and have standard formatting with disease-specific information. These tools are especially important as CDC and other public health authorities work with labs, hospitals, and other health providers to implement Meaningful Use standards.
  • The Public Health Information Network (PHIN) provides messaging, vocabulary, and certification resources to support NEDSS.

BioSense

National Syndromic Surveillance Program (NSSP). The CDC’s NSSP, aimed to surveil “syndromic data,” functions through collaboration among individuals and organizations at local, state, and federal levels of public health including the U.S. Department of Defense and the U.S. Department of Veterans Affairs, public health partner organizations, and hospital and health professionals. Syndromic surveillance includes monitoring of a variety of conditions, including infectious disease outbreaks and pandemics, reportable conditions not found by other systems (Ciguatera fish poisoning), mass gatherings (Super Bowl, conventions), natural and man-made disasters, injuries such as falls, bicycle-related injuries, drownings, drug overdoses, chronic conditions (asthma), and healthcare use (oral health, medication refills). NSSP features the BioSense Platform and a collaborative Community of Practice.

BioSense Platform

  • Originally created  in 2003 for early detection and rapid assessment of bioterrorism-related events, the focus expanded in 2011 to “situational awareness for all-hazards preparedness and response.” The NSSP provides practitioners access to and use of the cloud-based BioSense Platform for collection, evaluation, sharing and storage of “syndromic surveillance data.” The cloud-based computing environment has also been described as a “catcher’s mitt” through which public health departments can receive syndromic surveillance data from health care providers with Meaningful Use-certified EHRs.

Community of Practice

  • The Community of Practice includes CDC-funded grantees, non-funded states and jurisdictions that contribute data to the BioSense Platform, public health practitioners who use local syndromic surveillance systems, CDC programs, other federal agencies, partner organizations, hospitals, healthcare professionals, and academic institutions. Syndromic data include patient encounter data “from flu outbreaks to car accidents” found in emergency departments, urgent care, ambulatory care, and inpatient healthcare settings, as well as pharmacy and laboratory data. Other data sources “may include school and business absentee data, poison control reports, and even social media data that may present an emergent picture of public health events.”

BioSense 2.0

Behavioral Risk Factor Surveillance System (BRFSS)

Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System Survey Data. Atlanta, Georgia: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention

  • The BRFSS survey is designed by a working group of BRFSS state coordinators and CDC staff and administered by state health department staff. CDC describes the questionnaire as approved by all state coordinators.
  • Currently, the questionnaire has three parts: 1) the core component, consisting of the fixed core, rotating core, and emerging core, 2) optional modules, and 3) state-added questions. All health departments must ask the core component questions without modification in wording; however, the modules are optional.
  • The fixed core is a standard set of questions asked by all states that includes questions on demographic characteristics, plus queries on current health behaviors, such as tobacco use and seatbelt use.
  • The rotating core is made up of two distinct sets of questions, each asked in alternating years by all states, addressing different topics. In the years that rotating core topics are not used, they are supported as optional modules.
  • The emerging core is a set of up to five questions that are added to the fixed and rotating cores. Emerging core questions typically focus on “late breaking” issues. These questions are part of the core for one year and are evaluated during, or soon after the year concludes to determine their potential value in future surveys.
  • Respondents are contacted by phone and asked about age, race, sex, marital status, county, zip code, number of children living in the home, level of education, employment status, income, height/weight, amount of land and cell phone use, home ownership status, and a number of health-related and lifestyle questions.
  • Respondents are reassured their answers are confidential. At the survey’s conclusion, respondents are told “everyone’s answers will be combined to help us provide information about the health practices of people in this state.”
  • 2014 survey questions are found here.

The Youth Risk Behavior Surveillance System (YRBSS)

According to the CDC, YRBSS features a national school-based survey of representative samples of students conducted by CDC and state, territorial, tribal, and local governments. These surveys are conducted every two years, usually during the spring semester. The national survey, conducted by CDC, provides data representative of 9th through 12th grade students in public and private schools in the United States. The state, territorial, tribal government, and local surveys, conducted by departments of health and education, provide data representative of mostly public high school students in each jurisdiction.

The YRBSS “assesses six categories of priority health risk behaviors” — behaviors that contribute to unintentional injuries and violence; sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV infection; alcohol and other drug use; tobacco use; unhealthy dietary behaviors; inadequate physical activity. In addition, the YRBSS assesses obesity, overweight, and asthma. “Each year a new sample of schools and students is drawn. Students who participated cannot be tracked because no identifying information is collected.”

Purpose of the YRBSS

  • Determine the prevalence of health risk behaviors.
  • Assess whether health risk behaviors increase, decrease, or stay the same over time.
  • Examine the co-occurrence of health risk behaviors.
  • Provide comparable national, state, territorial, tribal, and local data.
  • Provide comparable data among subpopulations of youth.
  • Monitor progress toward achieving the Healthy People objectives and other program indicators.

YRBSS Data and Documentation 

CDC publishes information about the questionnaires and findings of the YRBSS.

Other Resources

  • Guide to HHS Surveys and Data Resources. The Guide to HHS Surveys and Data Resources is a compilation of information about all major data collection systems sponsored by the U.S. Department of Health and Human Services (HHS). The surveys and data systems collect a wide range of health and health care information, including health status and behaviors; health care access; resources, utilization and expenditures; insurance coverage and financing; functional status as well as social determinants of health and quality of care.