Core Content in the Community Health Dimension
A. Public Health Data
- Infant mortality, immunization levels, and communicable disease rates
- Environmental, social, and economic conditions
- Measures related to public health infrastructure, individual health care providers, and health care institutions
- Other summary measures of community health
- Disease surveillance systems
- Survey data
- Data on Healthy People objectives and Leading Health Indicators
B. Information From Health Care Provider Dimension (with personally identifiable information removed except under legally established public health protocols and strict security)
- Health status and outcomes, health events, health risks, health behaviors, and other individual characteristics
- Health care utilization and access, health insurance status
- Health care of community members
C. Other Elements
- Directories of community organizations and services
- Planning, evaluation and policy documents
- Compendia of laws and regulations
- Materials to support public education campaigns
- Practice guidelines and training materials for public health professionals
It will be possible to aggregate data within the CHD in various ways, such as city or town, neighborhood, health service area, household, family, or other grouping. Beyond the basic core information, the specific content of the CHD will vary depending if the community of interest is defined geographically, economically, ethnically, or by some other characteristic. The specific unit of analysis of the CHD will also vary and may include individuals, communities, health episodes, or health events. Any of these community units can be analyzed both longitudinally and at a specific point in time. This ability to aggregate and analyze data from diverse sources will enhance the public health response to events such as flu epidemics or outbreaks of food poisoning, for example.
To ensure privacy and confidentiality, data within the CHD will only be linked on an "as-needed" basis for specific projects. The use of personally identifiable information will be subject to legally established public health protocols with strict protections for security and confidentiality. Different approaches will be necessary to protect the confidentiality of each type of community health information. Policies, practices, and technologies designed to address confidentiality and privacy issues are discussed at the end of the Community Health Dimension section.
Who will use the Community Health Dimension?
The primary users of the CHD are public health professionals, community members and community groups. These individuals and organizations have principal roles in decisions and actions to improve community health. Health policy makers, including legislators and staff, population health researchers, Schools of Public Health or similar academic institutions, health care providers, and members of the general public with an interest in population health information will also be able to draw on anonymous and aggregated data in the Community Health Dimension to inform decisions and programs and to advance understanding of health issues. The CHD will be used in such locations as local, state, and federal public health agencies and other pertinent government offices; public and private hospitals and health care clinics; academic and research institutions; libraries and homes.
Access to the CHD will occur only along a carefully constructed and monitored continuum. Access will depend on the specific use and user of information. At one end of the continuum will be access to individually identifiable data by authorized public health workers for such legally authorized purposes as contact tracing for highly communicable diseases or identifying high-risk infants in need of intervention. At the other end of the continuum will be public access to anonymous, aggregated data to identify local public health problems and to set local public health priorities. In the middle of the continuum will be access to some identifiable data governed by protocols already in place and under the authority of groups such as the current Institutional Review Boards approved by the Federal Office for Protection of Research Risks. Access to non-personal community information and other non-sensitive resources would generally not be limited.
Where will Contents of the Community Health Dimension be Stored?
Legal and market place developments that will occur during the evolution of the NHII will dictate its final form and architecture. A monolithic CHD utilized by all public health agencies and other users will not exist. As currently envisioned, components and data sets will reside in multiple locations, separated geographically but accessible to authorized users for approved purposes as if maintained locally. Standards for electronic data exchange will facilitate data flows within the CHD. Data sets will be linked only as needed for specific approved purposes and with appropriate anonymity.
Privacy, Security, and Confidentiality Concerns
The CHD can only exist within a legal and policy framework that maximizes confidentiality, security, and appropriate use. The CHD raises legal, policy, and technical concerns that will need to be resolved before the full range of potential benefits from an integrated public health information infrastructure can be realized. New legal protections to secure the privacy, confidentiality, and security of Community Health Dimension data will be necessary. Issues requiring resolution include development of security and confidentiality protocols covering uses, users, and access modes for personally identifiable information; statistical protocols for aggregated data to protect individual privacy; and protocols to protect individual privacy for interactive applications providing public access to aggregated CHD data.
The Community Health Dimension of the NHII will enable public health providers and policy makers to make better use of existing information in their on-going mission to improve community health and public well-being. The CHD will help reduce the current burden on data providers by reducing duplication and overlap. It will also provide a reliable and accessible means for communities to locate de-identified data so they can more efficiently and effectively identify and solve their own health problems. In addition, it will give federal, state and local public health agencies the tools to improve the overall health of Americans. The CHD will strengthen confidentiality of existing data and provide the strongest possible protections for new data. Access to identifiable data will be limited to those with legitimate, specifically-approved purposes.