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Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Subcommittee on Standards
Hearing on Public Health Data Standards
November 12, 2013
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
The National Committee on Vital and Health Statistics Subcommittee on Standards convened a hearing on November 12, 2013. The meeting was open to the public and was broadcast live on the internet. A link to the live broadcast is available on the NCVHS homepage.
Subcommittee Members Present
- Walter G. Suarez, M.D., M.P.H., Co-Chair
- W. Ob Soonthornsima, Co-Chair
- Raj Chanderraj, M.D., F.A.C.C.
- Alexandra Goss
- Linda Kloss, M.A.
- William J. Scanlon, Ph.D.
NCVHS Committee Members Present
- Bruce B. Cohen, Ph.D., Co-chair of Population Subcommittee
- Leslie Pickering Francis, J.D., Ph.D., Co-chair of Privacy, Confidentiality and Security Subcommittee
Staff and Liaisons Present
- Kamahanahokulai Farrar, MHRM, Lead Staff, CMS
- Suzie Burke-Bebee, DNP, MSIS, ASPE
- Virginia Cain, Ph.D.
- J. Michael Fitzmaurice, Ph.D., AHRQ Liaison
- Marjorie Greenberg, NCHS/CDC, Executive Secretary
- Jim Sorace, M.D., ASPE
- Marietta Squire, NCHS
- Michelle Williamson, R.N., MSIS, CPHIT, NCHS
- Vivian Auld, NLM
- Betsy Humphreys, MLS, NLM
- Donna Pickett, RHIA, MPH, NCHS
- James Scanlon, ASPE
- Nicole Wilson, VA
Hearing Presenters List
- Scott Afzal, MD HIE (CRISP)
- Bill Brand, PHII (phone)
- Marcus Cheatham, JPHIT
- Rebecca Coyle, AIRA
- James Daniel, ONC
- Didi Davis, IHE QRPH
- Robert Davis, X12
- Roland Gamache, NACCHO
- Sundak Ganesan, CDC
- Joe Gibson, Marion County Health Dept., IN
- Janet Hamilton, CSTE
- Rich Huber, Genesis
- Charlie Ishikawa, ISDS
- Wesley Kennemore, APHL
- Vik Kheterpal, Care Evolution
- Marty LaVenture, MN DOH
- Nikolay Lipskiy, CDC
- John Loonsk, AMIA
- Denise Love, NAHDO
- Larry Nielsen, NAPHSIS
- Ken Pool, HL7 PHER; OZ Systems
- John A. Roberts, TN DOH
- Paula Soper, ASTHO
- John Stamm, EPIC
- Margret Amatayakul, MargretA Consulting, LLC
- Bill Alfano, BCBSA
- Jeff Benning, Lab interoperability Collaborative
- Christi Dant, CMS
- Michael J. DeCarlo, BCBSA
- Sean O’Connor, Genesis Systems, Inc.
- Dan Rode, AHIMA
- Terra Tolley, OZ Systems
- Kelly Turek, AHIP
- The Standards Committee will partner with the Privacy and Population Health Subcommittees to summarize the hearing’s key themes, messages and observations. Recommendations for the Secretary, HHS and the industry will be developed for how to enhance the adoption of public health standards and working standards.
- The Subcommittee will produce a letter that summarizes key hearing themes and observations as well as recommendations for the Secretary, HHS and the industry.
- A Privacy Subcommittee member requested suggestions for the development of a data stewardship framework for community health data use, for which no models currently exist.
- A request was made for a copy of the 2012 report issued by the French National Disease Surveillance System group referred to by Dr. Orlova that called for standardized access to public health data.
Tuesday, November 12, 2013
WELCOME, INTRODUCTIONS, AGENDA REVIEW
Walter G. Suarez, M.D., M.P.H. and W. Ob Soonthornsima, Co-Chairs
The purpose of the hearing was to gather industry input about the state of health data standards used by public health and population health programs. This initial national hearing about public health data standards was aligned with the National Committee’s focus on convergence across standards. Overall intent is to use data collected and captured in EHRs for administrative, clinical care, public health and population health purposes. The Subcommittee’s future focus is directed toward public health data standards. Public health domains include such areas as environmental and maternal child health as well as laboratories, immunization registry data exchanges and vital health statistics.
The upcoming retirement of NCVHS’s Executive Secretary Marjorie S. Greenberg was noted. Ms. Greenberg stressed the importance of public health and population health data.
NOTE: For further information about presentations, please refer to transcripts and PowerPoint presentations. The Public Health Data Standards Landscape presentation by Michelle Williamson, R.N., is posted on the NCVHS website. All participants received a copy of an updated document published by the Public Health Data Standards Consortium entitled, Health Information Standards and Related Organizations, the Players.
PANEL I National/Federal PH Perspective
- Public Health Informatics John Loonsk, AMIA
- PH Data Standards: Federal Laws and Regulations Nikolay Lipskiy, CDC
- PH Standards Organizations Marcus Cheatham, JPHIT (phone)
- PH Standards Organizations Anna Orlova, PHDSC
- State Organizations Denise Love, NAHDO
- Cross-Industry Organizations Bill Brand, PHII (phone)
Discussion Does the development of huge private sector databases (e.g., the Cleveland Clinic or the “Blues”) create barriers to database development within public health?
NAHDO’s position is that the role of government is not at odds with what is happening in the private sector, which has excellent data resources that aggregate across enterprises. While public and private data (which are similar) should be in sync, the government’s unique role is its ability to compel competitors to share data that everyone wants. As such, it is needed as an overarching convening body and independent and neutral source. As more foundations assume that function, the government must define and own its role. This role is three-fold – as a participant in the standardization process, a leader and a user.
The PHDSC calls for alignment of incentives to foster collaboration between the public and private sectors (example given of private sector interest and governmental lack of interest in public health standardization). The hope is that government will also become a standards user. A longstanding principle of governmental public health is that it does what others cannot or will not do. Growing private sector interest in population health should be supported by public health; and public health should be present at the community and regional levels in order to access and analyze large clinical repositories in population health and management databases. Governmental public health has the most inclusive definition of population health and the most experience with its metrics. An adequate number of skilled private sector workers are needed to address private and public health as well as private sector needs.
It is heartening to note that the federal government has a regulatory framework that provides leadership and facilitation around standards development. Concern about focus on clinical rather than population health standards was raised. Is public health being hijacked by medical care payment reform; and have community needs been truly integrated into the development of standards? The convergence of population health and public health informatics are being examined within the context of the Affordable Care Act. Because the ACA endows clinical care with certain historically public health functions, population health could be viewed as “clinical care trying to reinvent the public health wheel.”
Regulatory capabilities exist to achieve standardization. Incentives have been hard-fought for EHR standardization and for clinical care attention to health information exchange but not for population health needs. Meaningful use can play an important part in getting population public health functions into the developing population health infrastructure and clinical care. NACCHO has produced a paper about health disparities and informatics that identifies critical challenges in implementing informatics while not losing focus on community needs. There is no federal funding for databases that serve community needs such as hospital discharges, all-payer claims and vital records. With payment reform and ACOs, the business case for all-payer claims databases is just emerging.
Environmental data systems (currently under the jurisdiction of EPA, HUD, DOE and DOC) should be included in the national public health standardization framework or roadmap. Focus must broadly encompass the full-scale public health landscape, not just clinical outcomes. Database identifiers are needed. A question was raised about lab to public health data flow and their dependence on EHR intermediaries. All clinical information systems (including EHR, laboratory information management, pharmacy, payer and others) can use the same infrastructure with current technology. The United States is behind many countries in implementing laboratory health information exchanges.
The critical issue is how to build a regulatory agenda for public health informatics through a legal framework. Some believe that there will not be a massive consolidation or federalization of the public health system because it is decentralized by constitutional design; and the political will does not exist for change. Change will only occur with a highly refined, clearly articulated value proposition to work together, which is likely to happen incrementally, driven by localized proposals. Therefore, public health must work with local partners. Key points of the Public Health Data Standards Consortium’s strategic plan were outlined. To summarize, public health sector unification is very important to the delivery of public health mission and services. Can public health coordinate to the degree needed for Meaningful Use participation for public health measures? Despite public health silos, unification can happen with the collection of identifiers.
States and accountable care organizations need data for risk analysis and payment rate setting. There is a stronger push toward all payer claims data; and for more states to adopt them and join forces to improve the data. Funding has been the greatest barrier. Discussion ensued about the formation, functions and model of governance of a proposed Public Health Information Infrastructure Trust Fund. Governance would be by CDC (across centers) and a group representing the state and local practice community (such as JDHIT), noting differences in federal verses state and local data needs. Engaging stakeholders is a key principle in any informatics initiative.
PANEL II State/Local Public Health Perspective
- City/County PH Perspective Roland Gamache, NACCHO
- State/Territorial PH Perspective Paula Soper, ASTHO
- PH Laboratory Wesley Kennemore, APHL
- PH Immunization Rebecca Coyle, AIRA
- PH Vital Records Larry Nielsen, NAPHSIS
- Biosurveillance Janet Hamilton, CSTE
Discussion The importance of privacy, the absence of HIPAA standards applying to public health and variance between states (e.g., vital records but noting that most states are closed record states) were discussed. ASTHO participants recognize that states need systematic policies or laws requiring a base level of protection of all public health data. Guidelines, recommendations and funding for privacy and security are needed with the increase of information exchange through HIEs, clinical care and potentially ACOs. Even within states, different practices are in place for different diseases.
The question of what is and is not HIPAA-protected data was raised, along with what does and does not fall under the public health exclusion. Jurisdictions may have their own forms of consent. Lab results of reportable conditions must be reported followed by consideration of what data fall under public health exclusion. Who is liable? The lab is, for obtaining the consent and for how data are handled once results are in. When data are transmitted outside of the lab, liability depends upon the identity of the transmitter. Public health agents have certain liability exemptions. A fairly universal principle is that a reportable result must be reported to public health with no required consent. Patient notification depends upon the jurisdiction.
The ability of labs to disclose results directly to patients would affect Meaningful Use implementation, noting Stage Two emphasis on patient engagement. In fact, any disease or condition that is legally reported by labs, providers or business associates to public health falls under the public health exception. How a provider learns about a disclosure depends upon jurisdictional rules as labs are not required to communicate this information. Most states and territories have reporting regulations for physicians and labs.
Common themes in Panel II presentations included the need for additional resources (financial; human; brain power). Some standards have been developed through common consent while others are a result of jurisdictional contracts (e.g., with NCHS or SSA) that provide specified funding. Much of the standard reporting of vital records has been established by contracts with agencies within the federal government. At the national level, collaboratives such as JPHIT move standards forward and apply resources at the national, state and local levels. Greater leadership from state and local public health jurisdictions at the national level was encouraged. In addition, activities such as those of the Interoperability Working Group in New York State provide opportunities for states to work collaboratively with HIEs and EHR vendors. It was noted that the time has come to pursue congressional action around a more comprehensive Public Health Statistics Modernization Act focusing on all those elements noted above.
Categorical funding that supports standards development and collaborative support groups is needed. When several states agree upon a set of standards, a precedent for forward movement is established. The standardization process should incorporate a way to collect information from the field. While organizations such as Standards Worksallow members to initiate new standards (and place them in queues), no formal process exists to accomplish this on a larger scale. Public health would benefit from allowing states with specializations to move forward.
PANEL III Public Health (PH) Data Standards Developers
- HL7 Public Health Emergency Responsibility (PHER) WG Ken Pool, HL7 PHER
- X12 HCSDRG and PACDR Robert Davis, X12
- IHE Quality, Research, PH Committee (QRPH) Didi Davis, IHE QRPH
- CDC PHIN VADS Sundak Ganesan, CDC
- BioSense: Implementation of Data Standards Nikolay Lipskiy, CDC
- ONC S&I Framework Jim Daniel, ONC
- International Society for Disease Surveillance Charlie Ishikawa, ISDS
Discussion How do the standards help states and communities do their work? Communities need aggregated data rather than individual and standardized data. A key issue is how to evoke standards in a way that is beneficial to communities and their data needs.
Discussion ensued about why public health agencies are slow standards adopters (e.g., need for further training; drain on resources; and resistance to change). Some disagreed that public health departments are slow to adopt standards: rather, each department wants its own, which creates problems for vendors. A set of standards that works for everyone is needed. In a country that values state’s rights, this is where the federal government can be helpful. Data in EHRs can be useful to public health departments at a population health level (examples given).
Do standards developers believe that querying mechanisms apply to all areas of public health including case reporting and vital statistics? A recommendation was made to leverage what vendors are already building in their systems for that query model. IHE’s query model illustrated barriers encountered in the process. In order to leverage information transports for the secondary purpose of information gathering, IHE must have places to query. Because public health departments do not function as data marts to query from, IHE pursues health information exchange venues that are privately-owned or community-based. While the technology exists, policies and governance allowing for public health queries do not. Queries should cover circumstances that are important but not routine because that is where data access framework is useful. A nice fit exists between queries (i.e., the logic protocol Healthy Decisions [recognizing when something must be done] and structured data capture [determining what must be conveyed]).
Implementation challenges in the development of the Public Health Case Reporting Guide include mapping public health case report forms to the EHR information model. A public health participant described how the X12 organization helped to define the “right” question (i.e., “the data will be used for what purpose?”). Successful interchange occurs when that question is answered first. More opinions are needed about what public health must do to make better decisions about what they hope to accomplish.
A question was raised about the need for a standardized vocabulary. With case reporting, vital statistics are entered into the EHR, which diminishes the distinction between the EHR and public health. Therefore, it is necessary to avoid asynchronization and to ensure that duplication or different versions of value sets are not distributed. It was noted that ISO has a metadata repository for terminology.
Over the past fifteen years, there has been a concerted but small and poorly resourced effort to encourage public health and the Medicaid program to appreciate the need for standards. Are roadblocks due to culture or lack of resources and incentives? Within public health, the immunization process has changed significantly over time in response to learning from attempts to be interoperable across jurisdictions. There is a way to put different data needs into a standard that still works for everyone but the guides must be written accordingly and policies must be aligned with goals. While “easy” challenges have been fixed, it is now time to address the tougher issues (example given). Many corrections have been made within Meaningful Use.
A suggestion was made to evangelize a framework for electronic “cross data mapping,” which harmonizes and aligns with a policy perspective that allows for future planning. Some see this as a cultural paradigm shift. A discussion ensued about whether standards are policy “floors” or “ceilings”. One noted that in public health, one standard represents one standard while another noted that the Healthcare Service Data Reporting Guide contains data supported by a working relationship between X12 and public health partners that “goes beyond just the ceiling.”
Is the certification process limited to certain public health domains? The interaction between an EHR and forms manager independent of the content domain was further discussed relative to standards. For pre-population case reports, questions should be evaluated by ONC for duplication and content. ONC is looking for public health pilots with partners in the vendor world that show success.
PANEL IV Software and Application Vendors and Public Health Data Standards
- EHR Vendor John Stamm, EPIC
- PH Information Systems Ken Pool, OZ Systems
- Interoperability and Exchange Vik Kheterpal, Care Evolution
- Vital Records System Vendor Rich Huber, Genesis
Discussion As data are moved from EHRs to birth records, issues of data quality focus on the challenge of defining data elements. Each implementation requires a mapping exercise. Long-term, highly-specific standards with content and vocabularies must either be abandoned or completely adhered to, such that the template produces something reliable.
Within the vital statistics community, there has been resistance to Meaningful Use, State Three (where vitals are conspicuously left out). Also, a lack of interoperability between vital statistics requirements by state law and regulation and EHRs is evident (for example, a person’s name). Conflict about vital statistics verses EHR data ownership was raised as another concern. Data ownership depends in large part upon financial implications as well as on use of information. While there seems to be a willingness to share data when possible, anecdotal evidence indicates that it is easier to share de-identified data.
More coaching is needed for bidirectional sharing. For example, many registrars don’t fully understand the benefits of Meaningful Use involvement or the importance of being excluded. Better communication and more public dissemination about Meaningful Use would benefit the industry. For providers, the absence of vital statistics as a Meaningful Use requirement means that it doesn’t come up. Having vital statistics in its own silo is a policy and governance oversight with funding ramifications. When healthcare organizations focus on large initiatives like Meaningful Use or ICD-10, smaller ones in need of cooperation, incentives and time (like the birth registry) can be overlooked.
A discussion ensued about state privacy floors. Genesis is receiving more state requests for data encryption, particularly PII. Data are primarily encrypted before transmission and then when at rest, which provides a slightly better security protocol. Care Evolution is concerned that the “pendulum remains swung and stuck to data becoming hostage in public health.” They strive to help stakeholders deal with public health while maintaining privacy in the exchange and dissemination of information. The issue is how to maximize data utilization while maintaining public trust. Because of its unique position, public health should be more rigorous about maintaining privacy.
Questions arose about what drives the marketplace and how to get more vendors to the table to support pilot testing. More vendors will test with an output of federal and state procurements (i.e., Part Q-17 with a seal of approval from Bozo Limited, tested and certified). A need exists between providers and states as does a use case for identified data, which then move through the creation of standards for how data go from location A to B. Choices that organizations make depend upon available incentives.
Because there are currently no standards testing agencies, increasing expectations on existing testing facilities is recommended. Inclusion in Meaningful Use will help drive the industry toward testing regimens. Because providers often ask what they get from Meaningful Use, a suggestion was made to perfect existing processes before adding additional components.
The Subcommittee was asked to consider not specifying a particular transport standard for public health as was done in the Naming and Full Use Regulation for messaging standards. After several years of implementing messaging standards, the CDA standard is on the horizon. This can be sent via direct connect, reliable data interchange (in IHE terms) or in retrieval form for data capture. A 2012 report by the French National Disease Surveillance System group called for standardized access to public health data. Data mining, already intensely used in the business world, is the direction that the developed world has taken to process data and obtain access to public health data. In the long term, the goal is to interoperate as users of the systems that are created.
PANEL V State initiatives and Readiness for Standards Implementations
- Tennessee DOH John Roberts
- Minnesota DOH Marty LaVenture (phone)
- Indianapolis (Marion County Health Dept.) Joe Gibson
- Maryland HIE (CRISP) Scott Afzal
Discussion Consistent issues have been raised about resources, personnel, funding and support. Responses to a question about priority areas relative to case, cancer or lab reporting for public health data standards varied, to include: getting informatics, state and local public health staff involved in the process; establishing more model data-sharing policies; having “test harnesses” for sending immunization tests from EMRs to health departments; taking advantage of Meaningful Use; and considering best practices or models that vary by state. Some areas have regionalization while others split into groups. Proposals exist for regional informatics that support collaborative efforts, especially in rural areas. Good “requirements gathering of frontline people” is very effective but requires funding.
An additional question was posed about competing local and national priorities that interfere with resources for the public health agenda. Preparedness programs present a unique challenge in that they are well-funded, often operating in isolation and not always aligned with peacetime activities. Silos present problems, particularly when funding streams dictate short-term implementation rather than adherence to a strategic architectural view of health department information. This inhibits long-term planning, which prevents existing systems from building toward future goals. Ongoing system upgrades and public health accreditation are very costly; and the cost of day-to-day operations limits capacity building in other areas. Departments of Health face numerous challenges that include a lack of adequate resources, adhering to regulation and enforcement requirements. There are additional barriers in some states that separate IT from program staff.
A Privacy Subcommittee member requested suggestions for the development of a data stewardship framework for community health data use, for which no models currently exist.
Laura Striker, International Society for Disease Surveillance: Data standards must be considered in conjunction with data quality, especially with data sharing. Frameworks are needed to ensure and monitor data quality.
Subcommittee DiscussionDue to time constraints, Subcommittee discussion will take place later in the week and over the course of the next several months.
Next Steps The Standards Committee will partner with the Privacy and Population Health Subcommittees to summarize key themes, messages and observations. They will develop recommendations for the Secretary, HHS and the industry about how to enhance the adoption of public health standards and working standards.
Adjournment: 5:43 p.m.
To the best of my knowledge, the foregoing summary of minutes is accurate and complete.
Walter G. Suarez, M.D., M.P.H. W. Ob Soonthornsima