Frequently Asked Questions (FAQs)

Overview of Public Health and Data Standards | The Public Health Data Standards Consortium | Benefits of Standardization | Implementation Issues

Overview of Public Health and Data Standards

What is public health?

Public health addresses the health of the population as a whole rather than medical health care, which focuses on treatment of the individual ailment. In 1988, the Institute of Medicine (IOM) defined the mission of public health as “fulfilling society's interest in assuring conditions in which people can be healthy.(1)” The IOM’s 2003 report entitled The Future of the Public’s Health builds upon the previous definition, describing the public health system as made up of several actors working together to improve population health and eliminate disparities. Actors include government public health agencies, health care delivery systems, public health and health sciences academia, communities, business, employers and media.(2) A number of activities contribute to assuring conditions for population health, including, but not limited to, the following: preventing epidemics and the spread of disease; protecting against environmental hazards; preventing injuries; promoting and encouraging healthy behaviors; responding to disasters and assisting communities in recovery; and assuring the quality and accessibility of health care for underserved populations. (See Public Health Data Standards Tutorial Module 1.)

What are public health data?

Public health data are central to public health’s mission of improving health and preventing disease, injury and disability.(3) Each of the programs or domains addressed through public health rely on data to inform program design, monitor progress, fulfill reporting requirements, bill for services, evaluate programs and/or inform policy decision making.(4) Public health data are much broader than clinical data; they exist across a public health system and include environmental, socio-cultural, economic, vital statistics, and survey data. For example, much of the success in lowering the incidence of lead poisoning can be attributed to the use of multiple sources of public health data that reside both in and outside of public health agencies (e.g., public health environmental data, clinical laboratory data, encounter data from mental health professionals, and housing data). (See Public Health Data Standards Tutorial Module 3.)

How do health data become health statistics?

Health statistics are numerical data that characterize the health of a population and the factors that influence its health. Health statistics are distinguished by their focus on 1) quantification, 2) aggregation of data from observations on individuals, their communities, and the context of their communities, and 3) population health and the influences on it.(5) Some commonly used data definitions or standards for health statistics are as follows: proportion, rate, ratio and index. These indicators transform raw data about individuals to aggregate information about specific populations.

What are data standards?

Data standards are the common language that allows information to be shared and compared across individual data systems, electronically linked in a secure environment, and presented in ways that are clear and relevant. A formal definition of data standards comes from the International Organization for Standardization (ISO). ISO is a major international standards organization (the American National Standards Institute (ANSI) is the U.S. member), which coordinates and develops international voluntary consensus standards that facilitate world trade and contribute to public safety and health. According to ISO, standards are “documented agreements containing technical specifications or other precise criteria to be used consistently as rules, guidelines, or definitions of characteristics, to ensure that materials, products, processes and services are fit for their purpose.”(6) In medical care, for example, providers, insurers, and vendors of health care claims data are mandated under the Health Insurance Portability and Accountability Act (HIPAA) of 1996 to adopt standards to support electronic data interchange for a variety of administrative and financial transactions. (See Public Health Data Standards Tutorial Module 5.)

Why are data standards important to public health?

Data standards are not foreign to public health agencies. Many public health professionals are familiar with and apply standards for vital statistics data (e.g., birth and death information), standards for reporting specific public health data (e.g., infant mortality rates) and standards for classifying diseases (e.g., International Statistical Classification of Diseases and Health Related Problems (ICD) -9^th or 10^th version). The Public Health Data Standards Consortium supports the use of these well-known standards as well as other data standards that will improve the quality and utility of data and public health’s ability to perform core functions.

The Consortium formed to assure public health representation in the standards setting processes under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and to promote use of HIPAA and other national standards. Public health agencies should expect benefits similar to the private sector by using standards for electronic exchange of encounter data (e.g., increased efficiency of data transactions and reduced costs and/or increased return on investments (ROI). The resources to develop and exchange messages with public health partners are scarce and the field cannot afford to build custom communication systems. Proprietary solutions make data use and exchange more difficult and more expensive. Using common standards allows public health to leverage the work of others and encourages commercial vendors to build affordable systems that public health can use. It also facilitates exchange of information with health care providers.

Standards are necessary to transition systems of data flow from paper to electronic (e.g., vital records) and to integrate data from disparate systems (e.g., surveillance data). Better and more comparable data support performance measurement and improvement.

What are public health data standards?

Existing and emerging data standards that are most relevant to public health, health statistics and public health informatics fall into several different categories.  The following are widely used public health data standards: Classification systems (e.g., ICD-9-CM or ICD-10); nomenclature (e.g., Systematized Nomenclature of Medicine); message format or electronic data interchange protocols (e.g., Accredited Standards Committee (ASC) X12 and Health Level 7 (HL7), or Extensible Markup Language (XML)).(7) (See Public Health Data Standards Tutorial Module 5.)

Who are the stakeholders for public health data standards?

Public health decision makers (state, local, federal level public health agencies and other policy makers), public health professionals, providers (e.g., hospitals, physicians), national professional organizations, researchers, payers, vendors, other public health data users, and the public.

How are public health data standards developed and who contributes to the standard setting process?

Several organizations and committees contribute to the process of setting health data standards in the United States. Standard setting organizations include Standards Development Organizations (SDOs) and Data Content Committees (DCC).

• SDOs are organizations that develop and maintain the models, data dictionaries, structure, syntax, and implementation materials for electronic transaction standards between and within providers. All designated SDOs maintain policies that meet the requirements of ANSI, which accredits standards committees and provides an open forum for participants to identify, plan and agree on standards and assurance of due process.
   

• DCCs are committees that provide a national forum for discussion, review, and action regarding the determination or maintenance of specific datasets (or data content) to reside in the health care financial and administrative transaction standard.

The Designated Standards Maintenance Organizations (DSMO) are the specific DCCs and SDOs who have agreed to maintain those standards designated as national standards in the HIPAA Administrative Simplification standards for electronic transactions final rule. SDOs include: ASC X12, HL-7 and National Council for Prescription Drug Programs (NCPDP). DCCs include: Dental Content Committee (DeCC), National Uniform Billing Committee (NUBC) and National Uniform Claim Committee (NUCC).(8) All of these organizations review and comment on modification proposals and make recommendations to the National Committee on Vital and Health Statistics (NCVHS).

In brief, the national standard setting process is consensus-based consisting of several steps: 1) presenting the need for a standard to an appropriate ANSI– accredited or alternative organization (making the business case); 2) designating an SDO to develop the standard; 3) developing the concept, drafting the proposed standard, commenting, and reaching consensus among industry representatives, professional associations, consumer groups, government agencies, vendors; 4) approving and publishing the standard; and 5) revising the standard based on comments about implementation.(9) (See Public Health Data Standards Tutorial Module 5.)

Why is the standard setting process important to stakeholders?

With some notable exceptions, the public health and health services research communities have not actively participated in national standards discussions or implemented national standards at the state or local level. If public health stakeholders choose not to participate in the standards development discussion, they run the risk of standards being developed that do not meet public health and researcher needs (e.g., missing data elements or poorly defined data elements).(10) Failure to adopt data standards will make it more difficult to communicate with the clinical care delivery system which faces federal mandates to adopt uniform data standards, especially for those databases that rely heavily on encounter data (e.g., hospital discharge data sets). Initially, it may be time-consuming for public health stakeholders to adopt national standards and difficult to resist the urge to create new silo systems to meet information needs. However, over time, uniform data standards will increase access to, decrease costs of, and improve the quality of public health information. (See Public Health Data Standards Tutorial Module 6.)

How do the provisions of the Health Insurance Portability and Accountability Act (HIPAA) correspond to the call for public health data standards?

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 mandates that the U.S. adopt uniform national standards for electronic transactions related to health care encounters. While public health is not mandated to adopt these standards, except as payers or providers of health services, the Public Health Data Standards Consortium member organizations agreed it wise for public health to adopt HIPAA standards, where appropriate. For example, even though HIPAA Administrative Simplification standards are focused on insurance transactions, health care encounters that trigger insurance claims also trigger the reporting of most public health data. Therefore, the Consortium developed the Health Care Services: Data Reporting guide as a resource to public health stakeholders to facilitate their ability to adopt HIPAA transaction standards, and, in turn, better communicate with care delivery systems, especially to address data needs that rely on encounter data (e.g., specifications for data elements such as race, ethnicity, geographic location, and a limited set of clinical data elements). Other features of HIPAA, such as the development of unique identifiers and standards to protect the privacy and security of data, will also have an impact on how public health data are collected, transmitted, stored, and used. Currently, the Consortium is playing a role to bring perspectives of state and local public health and research communities to the on-going development of the HL-7 functional model for the Electronic Health Record.(11)

Is the Public Health Data Standards Consortium involved with the HIPAA Privacy Rule?

Yes. The Consortium created the Privacy, Security and Data Sharing (PSDS) Committee to represent public health and health services research interests on privacy issues and to address balancing the need for patient privacy and confidentiality with the need for use of data for public health and research. (See Privacy, Security and Data Sharing Committee.)

With grant support from the Heath Resources and Services Administration and the CDC’s National Center for Health Statistics, the Committee has developed case studies that will serve as illustrations of how to implement sections of the HIPAA Privacy Rule in the complex local public health agency setting. (See HIPAA Privacy Case Studies for Local Public Health Agencies.)

The Public Health Data Standards Consortium (PHDSC) (12)

What is the PHDSC?

The Public Health Data Standards Consortium (PHDSC) is a not-for-profit membership-based organization of federal, state and local government agencies; professional associations; and public and private sector organizations established to develop, promote, and implement national standards for population health(13) practice and research. The Consortium's mission is to bring a common voice from the public health community to the national efforts of standardization of health information.

Who are the PHDSC’s members?

As of June 2006, 36 organizations and two individuals are members of the Consortium. The Consortium is working with other organizations that it views as essential members to achieve the Consortium’s Mission to join its organization. For a list of members, go to Our Members.

What does the PHDSC do?

While the Consortium’s initial focus was on the HIPAA transaction standards, it has always had a broad vision for addressing the full array of health data standards needs for the management and evaluation of on-going public health programs, as well as for deriving information on population health from past and present data sources and identifying the need for future data sources.(14) These needs now include standardization of clinical, environmental, socio-cultural, behavioral and economic data relevant to the health of the US population.

The lessons of HIPAA demonstrate that successful implementation is based on local capabilities to accept and incorporate standardization processes in the daily workflow. The Consortium will serve as an intermediary entity among federal agencies, standards development organizations, and state and local public health agencies, so that the tasks of developers and the needs of implementers will be addressed in a collaborative and timely manner.

Most of the Consortium activities are carried out by the Consortium Program Committees. The active committees include:

• Data Standards Committee

  • The Sub-Committee on Health Care Services: Data Reporting Guide

  • The Sub-Committee on Payer Typology

  • The Sub-Committee on Public Health Vocabulary (currently not active)

  • The Sub-Committee on External Cause of Injury Codes (ECIC)

• Privacy, Security and Data Sharing (PSDS) Committee

• Certification Committee (currently not active)

• Nationwide Health Information Network (NHIN) Committee

• Communication and Outreach Committee

Is the PHDSC a government agency?

The PHDSC is not itself a government agency, but many of its members represent various federal, state and local government agencies.

What are the benefits of joining the PHDSC?

By joining the PHDSC, members have:

• access to information and news about the latest standards development efforts;

• an entity that represents your interests without your having to master the complexities of the standards process;

• a support network for standards development and implementation;

• an opportunity to participate in identifying public health data standards needs and lead efforts in addressing them; and

• an opportunity to make a business case (rationale) for national standards.

How can I or my organization join the PHDSC?

For information on how to join the Consortium, visit Join the PHDSC.

Benefits of Standardization

The following FAQs are examples of benefits for specific categories of stakeholders.

As a public health decision maker or professional

How will data standards assist decision makers and staff in performing everyday core public health data functions (e.g., surveillance, vital statistics, evaluation)?

Standardization is necessary to carry out the three core functions of public health described by the Institute of Medicine – assessment, policy development and assurance of the population’s health.(15) (See Public Health Data Standards Tutorial Module 1.) Standards already define the paper-based data collection processes for the national vital statistics and surveillance systems. Recently, the National Center for Health Statistics began working with the National Association of Public Health Statistics and Information Systems to reengineer the birth and death vital statistics systems to be electronic systems. The Centers for Disease Control and Prevention has designed the Public Health Information Network to integrate and transfer public health, laboratory and clinical data efficiently and securely over the Internet. The transition from paper-based to electronic transmission of public health data requires national data standards. Automation has several advantages: it improves compliance with reporting requirements; it improves completeness and timeliness of reports; and it reduces redundancies. Public health departments will spend less time waiting for data, reentering data, searching for data, and cleaning data and more time on tasks such as investigation, analysis, and response.

As a professional public health data organization

Will data standards impact the efficiency, effectiveness and/or costs of data transactions for my members?

Public health data organizations can expect benefits similar to the private sector by using uniform standards for electronic data interchange (EDI). The private sector’s primary motivation to create standards for EDI in the early 1990’s was to lower administrative costs and improve operations. National uniform standards for EDI decrease the time and money associated with administrative transactions and improve the quality, quantity, and accessibility of information. The benefits of standards for EDI are expected to outweigh the hardware, software, and training costs necessary for implementation. Electronic submission of claims for reimbursable public health services (including Medicaid) will reduce costs to public health agencies and/or increase returns on investments (ROI). (See Public Health Data Standards Tutorial Module 6.)

As a researcher or other public health data users

How will data standardization facilitate the integration of multiple data sets and impact public health statistics and analysis?

National data standards are necessary to support the larger goal of integration. Integration can occur at many levels: across programs; across organizations; across jurisdictions; across levels of government; across settings of care; across public and private sectors; across different geographic areas; or across different types of data (e.g., administrative, clinical and survey data). Data standards and integration are necessary to support linkage of disparate data at the individual level for research and decision making purposes, while protecting confidentiality and privacy in a secure environment. Standard identifiers will create the ability to link different data types to create a more complete picture of the health of the public and how various factors impact it. For example, integrating and comparing vital record data, such as fetal death data, with Medicaid data may help to understand precursors of infant mortality. Integrated data systems increase the ability of our public health system to identify and control threats such as bioterrorism, multi-drug resistant bacteria, and emerging infections that cross programmatic and geographic barriers. (See Public Health Data Standards Tutorial Module 6.)

As a private vendor

What are the benefits of developing interoperable electronic reporting systems using national data standards as a platform?

Many customers of vendors are required to adopt federal data standards; to be competitive, vendors must be compliant. Additionally, customers often deliver services in multiple jurisdictions. Standards-based systems will decrease the burden associated with reporting data to multiple locations.

A move to an electronic environment based on proprietary technologies, applications, and systems misses the larger goal of interoperability across all programs and jurisdictions and with data trading partners. Systems based on data standards reduce the investment of organizations in building customized interfaces in order to share or integrate information. (See Public Health Data Standards Tutorial Module 6.) According to one Consortium member, because standards were developed based on global needs rather than those of a single project, the data collected and interfaces built are much more likely to function well over the long-term as well as when combined with data collected for different projects. The time spent understanding and implementing a standards-based model, such as HL-7, pays off in terms of reduced need for testing and validating a home-grown design, and increased ability to reuse data, interface components, and skills in the future.

For the public

How will data standards efforts support a local, regional and national health information infrastructure?

NCVHS, advisor to the Secretary of the DHHS on the implementation of HIPAA, refers to standards as the “fundamental building blocks of an effective health information system; … essential for efficient and effective public health and health care delivery systems.”(16) According to a recent talk given by the Senior Advisor to National Health Information Infrastructure (NHII) within the Department of Health and Human Services, Dr. William Yasnoff, “standards are the foundation for NHII.”(17) With standards as a common platform, local, regional and national information infrastructures can be developed through, for example, electronic medical records systems, consumer health information systems, decision support systems, etc., and other health information technology solutions.

Implementation Issues

What financial and non-financial resources are available to support data standardization for public health practice and research?

State public health agencies that have implemented standards to promote public health practice appear to have been creative in the ways they have supported their efforts. According to one case study, the implementation of a standards-based emergency department data system within a state health department was supported through the reallocation of existing financial resources and other non-financial resources (e.g., a strong collaboration with the state hospital associations to garner industry support for transition to a new emergency department data system). (See A Case for Evolutionary Change and Return-On-Investment For Using Data Standards: A Case Study Of New York State's Data System.) In some cases, new federal monies associated with electronic disease surveillance or bioterrorism preparedness have helped to support implementation.

How can I get involved in the national data standards discussion?

The Consortium is a vehicle through which you or the organization you represent can stay abreast of recent standards development efforts that impact public and population health and/or can get involved in the standards discussion. Currently, active Consortium members represent the confederation at National Uniform Billing Committee meetings, National Uniform Claim Committee meetings, HL-7 meetings and ASC X12 meetings. National standards development organizations’ meetings offer opportunities to discuss changes in data standards, to discuss implementation issues, and to network. Attendees may serve as resources for training and technical assistance to implement standards-based information system in your organization.

If public health agencies are already faced with requirements for reporting, grants, research and/or payment, who is requiring public health to use the standards the Consortium is helping to shape?

Currently, public health is not mandated to use the HIPAA standards, unless an organization is a provider of health care services. However, the Consortium is promoting these standards in national and federal discussions in the interest of population health. Standards for clinical data are being adopted at the federal level and may migrate to other partners by example or requirement. According to its strategic plan, the Consortium views data standards not only as a product but a process. Implementation of data standards will require standardization of population health practices among various stakeholders. Therefore, the Consortium will continue to work with SDOs and DCOs to represent public health’s voice in the data standard development activities. It also will promote adoption and implementation of these standards, as recommended by the CDC, NCVHS and DHHS.(18)

What steps do I need to take to adopt data standards in my organization?

The process of standards adoption may vary from organization to organization; however, the following list provides one example of needed steps:(19)

• Determine whether your information systems rely on data sources for which national standards are being promoted to advance population health.

• Identify users and collectors of the specific data source. They will serve as the stakeholders who would benefit most from a standards based information system.

• Designate a design team responsible for creating the information system.

• Identify the prioritized questions to be answered by the proposed information system.

• Secure executive management “buy-in” to the list of questions identified by the design team.

• Select the relevant set of data elements needed to answer those questions.

• Decide how to organize the data.

• Determine the necessary response time required of the system.

• Balance priority questions against the implementation budget to determine the scope of the resulting system design, implementation plans and development costs.

• Review the national standards and implementation guides to select the appropriate internal or external code sources and/or formats.

• Create a separate document for requirements specific to your organization that may not be addressed in the standard but are still permissible.

• Obtain translation software to receive the standard format and facilitate a user-friendly translation of the transmitted data.

• If available, utilize tools such as mappings (or crosswalks) to assist in creating the translation or “mapping” of specific data elements for your information system to the standard.

• Involve stakeholders of the proposed information system in design and implementation phases to create a practical system that will benefit data users and collectors.

• Finalize system design with input from various stakeholders.

• Conduct training sessions with potential users of the standards-based information system.

• Provide information system documentation for users.

• Implement the standards-based information system.

• If there are data elements that do not map onto the standard, notify the Consortium to initiate a discussion regarding the business case for incorporating your specific data requirements into the standard.

• Commit to updating and revising the standards-based information system, involving stakeholders in the process to ensure that standards will evolve to meet future needs.

Who can help me implement data standards in my organization?

Several members of the Consortium have volunteered their contact information to serve as a resource to others regarding standards implementation. (See Our Members.)

(1) http://www.phdatastandards.info/knowresources/tutorials/module1.htm#note1#note1
(2) Institute of Medicine Committee on Assuring the Health of the Public in the 21^st Century. Board on Health Promotion and Disease Prevention. (2003) The Future of Public Health in the 21^st Century. National Academies Press. Washington, DC.
(3) http://www.phdatastandards.info/knowresources/tutorials/module3.htm#note1#note1
(4) Examples of public health programs or domains that create and utilize public health data include, but not limited to, the following: maternal and child health care; nutrition; vital records; immunization; HIV/AIDS; infectious disease surveillance; prevention programs (e.g., adolescent school health, injury prevention and control, tobacco prevention and control); environmental health; public health informatics; and preparedness policy.
(5) National Committee on Vital and Health Statistics. Shaping a Health Statistics Vision for the 21^st century. Final Report. November 2002.
(6) http://www.phdatastandards.info/knowresources/tutorials/module5.htm#note3#note3
(7)
(8) http://www.phdatastandards.info/knowresources/tutorials/module5.htm#note22#note22
(9) http://www.phdatastandards.info/knowresources/tutorials/module5.htm#note23#note23
(10) http://www.phdatastandards.info/knowresources/tutorials/module6.htm#note1#note1
(11) http://www.phdatastandards.info/knowresources/tutorials/module5.htm#note15#note15
(12) Answers to questions in this section are drawn from the Consortium Strategic Plan and slide presentation about the Consortium. Go to Mission and Strategic Plan and Slide Presentation About the PHDSC.
(13) National Committee on Vital and Health Statistics. Shaping a Health Statistics Vision for the 21^st century. Final Report. November 2002.
(14) Ibid.
(15) Institute of Medicine, Committee for the Study of the Future of Public Health, Division of Health Care Services (1988). The Future of Public Health.
(16) http://www.phdatastandards.info/knowresources/tutorials/module5.htm#note14#note14
(17) Yasnoff, William A. National Health Information Infrastructure (NHII): Moving Toward Implementation. Presentation to Department of Medical Informatics, University of Utah. January 27, 2004.
(18) The Consortium Strategic Plan. Go to Mission and Strategic Plan.
(19) This example draws from Consortium papers and case studies written by Robert Davis: Road Map for Implementing the Health Care Service: Data Reporting Guide and Return-On-Investment For Using Data Standards: A Case Study Of New York State's Data System.