Testimony To The National Committee On Vital And Health Statistics

Subcommittee on Standards and Security

Panel - Coordination of ongoing national healthcare standards initiatives
Denise Love, MBA
Executive Director
National Association Of Health Data Organizations (NAHDO)
Washington, D.C.—August 29, 2002

On behalf of the National Association of Health Data Organizations (NAHDO).  I want to thank you, on behalf NAHDO, for the opportunity to offer testimony.  NAHDO is actively involved with standards initiatives at the national level and has been evaluating implications of these initiatives for state health data agencies.

1) What is the purpose of your initiative? Briefly discuss your initiative’s objectives, priorities, and strategies to succeed.

The initiative I will speak today concerns the expansion and improvement of state administrative data systems, how it fits into the National Health Information Infrastructure, and possible implications of the Patient Medical Record Information (PMRI) on administrative data systems.  Since 1986, NAHDO has been dedicated to promoting the uniformity and comparability of health data, so we welcome the NCVHS and HHS initiatives furthering this effort. 

Health data bases are the physical foundation of the national health information infrastructure.  Detailed clinical data in electronic, standardized formats have are not readily available, so states have filled this gap with Administrative health care data, beginning with inpatient discharge data and recently expanding to non-inpatient discharge data. 

More than forty inpatient discharge data systems are maintained by state health data agencies.  Thirty-nine states have legislative mandates to collect discharge data from providers for public reporting purposes related to cost, quality, and access.  At least ten state health data agencies obtain discharge data voluntarily from providers.  A state health data agency may be a state agency or a private organization (such as a hospital association).    The patient’s health care encounter triggers reporting of an abstract from hospital financial systems that includes patient demographic, diagnostic, procedure, and reimbursement information. 

Many states base their reporting systems on the Uniform Billing (UB-92) format or the Uniform Hospital Discharge Data Set (UHDDS) defined by the NCVHS, finding these data a source of low-cost, population-based health care utilization data that provide large numbers of observations.  These data are increasingly serving as sources for policy and market evaluations, quality improvement, research, and public health purposes.  But these data are not without limitations:

• Lack of clinical data elements from the medical record
• Diagnostic and procedure coding inconsistencies
• Fifty state formats as states add local codes or adjust national codes

Despite the challenges, discharge data systems have evolved over 20 years.  Discharge data support national initiatives such as the Healthcare Cost and Utilization Project (HCUP).  The Agency for Healthcare Research and Quality (AHRQ) is working with states (29 in 2000)  to develop prevention, access, patient safety, and inpatient quality indicators derived from discharge data.  The public health and research communities are conducting validation studies, analytic tool development, and linkages with other data sets to increase the utility of discharge data.  With the advent of HIPAA, state health data agencies have an opportunity to improve the timeliness and uniformity of discharge data.  Claims attachment requirements will serve as a means of automating and capturing clinical data fields with potential to enhance existing data systems.

2.  What organizations or professional societies are participating in your initiative? Briefly discuss the membership commitment considered within your initiative’s organizational structure.

NAHDO is a non-profit membership and educational organization created in the mid-80s to improve the uniformity of health care data and promote the public availability of that data.  Over the past 17 years, NAHDO has brought together state, federal, and private sector interests to strengthen, and expand health care data reporting across states.  NAHDO provides technical assistance to states around the collection, analysis, and dissemination of health care data. 

In addition to membership services and Annual and Regional Meetings, NAHDO advocates for funding and legal support for statewide health care data collection and provides targeted technical assistance to state health data agencies.   Education of state legislators and policymakers about the role health care data play in public health assessment, accountability, quality improvement, and consumer/market decision making.  There is no federal funding source for state health care data collection so sustaining funding is a challenge for some states. 

NAHDO members include federal, state, and private sector organizations and individuals with an interest in the collection and use of health care data.  Current committees and workgroups include:

NAHDO National Quality Committee, Chair Walter Suarez, Minnesota Health Data Institute

HIPAA Workgroup: Robert Davis, NYS DOH and Vicki Hohner, Fox Systems

Program Committee: Michael Kassis, CA Office of Statewide Health Planning and Development and Patricia Merryweather, Illinois Hospital Association ; Nominating Committee

Emergency Department data development is a NAHDO priority.  In 2002, NAHDO convened the first ever national meeting around Emergency Department Data Development and is preparing a toolkit and ED data resource kit and clearinghouse for statewide ED data systems. 

NAHDO’s current grants and contracts include:

• Healthcare Cost and Utilization Project (HCUP): Subcontractor to Medstat
• CDC Cooperative Agreements:
• Improving State and Local Health Information Systems Dissemination
• National Electronic Disease Surveillance System, Partner Organization
• Building Research Infrastructure and Capacity, Agency for Healthcare Research and Quality
• Public Health Data Standards Consortium: Training materials for the Health Care Data Reporting Guide
• Emergency Department Data Conference and ED Data Development Clearinghouse

National standards development under HIPAA is an opportunity to forge partnerships and collaboration.  NAHDO is working with others to promote public health information infrastructure development.  NAHDO’s collaborations include:

• Founding member of the Public Health Data Standards Consortium, member of Steering Committee
• NEDSS Partner Organization
• E-HealthInitiative Steering Committee
• NAHDO members have been referred to serve on the Connecting for Health/Markle Foundation Subcommittees.

3) How do your activities interact with the NCVHSs Patient Medical Record Information (PMRI) standards and terminologies?  Briefly discuss your initiative’s present level of use of PMRI standards and terminology, any gaps your initiative identified with them, and your plans for future involvement in filling those gaps. 

Clinical, outpatient, and longitudinal data are major data gaps that will not be filled immediately.  Building on existing systems, making incremental enhancements to existing system,s will fill gaps in the short term while the PMRI evolves and becomes widespread. 

NAHDO is actively working to help fill the gaps:

1. Promote uniformity across existing state discharge data systems: 
   NAHDO is actively involved with the adoption of Electronic Data Interchange (EDI) by state agencies for public health and discharge data reporting.  State discharge data systems have adapted the UB-92 (maintained by the National Uniform Billing Committee) or the Uniform Hospital Discharge Data Set (UHDDS) defined by the NCVHS as their data source and the information systems that support UB-92 data collection will be mandated to use ANSI ASC X12 837 claim / encounter standard mandated by HIPAA.  The development of a national electronic standard for the institutional encounter for public health and research purposes is underway in collaboration between the NYS DOH, the Public Health Data Standards Consortium, and NAHDO.  Assisting states to conduct a cross-walk between the Guide and their current reporting requirements is an important first step for states evaluating EDI for public reporting. 
2. HL7 Claims Attachment: NAHDO recognizes the importance of the eventual interface or merging of the Electronic Medical Record and the X12N Electronic Data Interchange (EDI).  The administrative/ discharge data are incomplete and are derived from financial data systems in hospitals.  The ability to supplement discharge data by accessing clinical and medical record data without manual chart abstraction will improve the depth of information for quality, public health surveillance, and outcomes studies. 

   The claims attachment has the potential to serve as an important tool or vehicle for public health content.  NAHDO will participate in the HL7 Claims Attachment Workgroup as an important component of public health’s national standards agenda.  NAHDO will work with the Consortium, its members, and the Workgroup to identify priorities for claims attachment content for enhancement of the existing institutional and professional claims reporting to public health.

3. National Collaborations:  NAHDO is actively involved with the Public Health Data Standards Consortium to identify priority data elements and data gaps for inclusion into the legally-defined standards process.  The Health Care Data Standards Reporting Guide is a first effort to adapt industry transaction standards for the needs of public health and research and what we learn will serve as a platform for non-inpatient data sets.  Working with organizations across the public health and research community to identify data gaps and build the “business case” for public reporting of emerging data fields and data elements is crucial.  We cannot continue to assume that data in use by healthcare providers billing or clinical operations will only have this sole use.  As the PMRI is evolving it will be critical to acknowledge secondary uses of the data and make some accommodations for those uses.
4. Non-inpatient data development:  Most health care is delivered in non-inpatient settings, yet these data are not widely available for population-based studies at the state or sub-state level.  This is a critical data gap.  Recognizing that it will take years for comprehensive data to become available in the outpatient arena, NAHDO will continue to help states expand their data reporting continuum to include ambulatory surgery and ED data.  It is not inconceivable that every state with an inpatient discharge data system in place could add non-inpatient discharge data with marginal costs to the collector and the supplier.

With the advent of HIPAA, we now have a legal and technical framework for data exchange and protections. 

4) Recognizing that a number of ongoing efforts to coordinate PMRI and terminology standards exist, please discuss any lessons-learned by your initiative as well as your relationship with the activities of the other health data standards initiatives.

State health data agencies have faced challenges, some of which can be expected in PMRI implementation.  These issues include privacy, proprietary concerns, data quality, reporting compliance, and justification of need for reportable data.  A source of sustainable funding is a concern for all data initiatives.  Once PMRI data become available, scientific validation of data and indicators will evolve over the years.  We invite NCVHS to draw on this expertise for the following expected challenges in implementing PMRI:

Privacy/confidentiality:  Proprietary concerns  surrounding data collection can confound the public debate and use privacy to limit or cease public reporting.  State laws vary, further challenging national standards initiatives.

Data quality and validity: Never perfect, data that are used improve over time.  NAHDO members have experience in documenting data limitations and using tools and techniques to incent assure data suppliers  improve data coding, timeliness, and completeness.  Data suppliers and collectors can work together to continuously improve data resources---but it takes years of concerted effort to make data partnerships succeed.

Data collection priorities:  The cost of collecting and using data require careful consideration of minimum necessary data for purposes that are defined.  Solving the barriers around high-priority data needs paves the way for incremental expansion and enhancements later.

Data use and access:  Clearly defining how data collected will be used, who will or will not have access to data resources, and at what level of detail is one of the first steps in a successful data initiative. 

Analytic infrastructure:  Information infrastructure is more than computers and networks:  Analytic credibility and application of appropriate methods and tools is a greater challenge for agencies than the actual data processing.  Training and workforce recruitment and retention are especially difficult in the public sector.

Who pays?  Data systems development is slow and in the early stages, documenting progress is difficult.  State health data agencies are under-funded and struggle to implement existing systems when resources are solely provided by the state.  Sustainable and diverse sources of funding, provided by both data producers and data users, will be essential to the success of the PMRI. 

Comparability across provider systems and states:  Standards are defined nationally, but implemented locally, which requires negotiation, and relationships of trust between data suppliers and collectors.

As providers automate the capture and abstraction of clinical and patient care data, it is important to carefully think through minimum data needs for public health, market, and consumer purposes.  Public reporting initiatives rely on the support of data suppliers.  Because of the burden imposed, the business case should be made.  All data that are collected must have a justification or use defined.  Data that are collected and warehoused, but not widely used, are of poor quality.

Standards development and implementation takes years.  Public health agencies are notoriously under-funded and retaining a qualified technical workforce in state and local governments will continue to challenge systems development.   

5) Discuss what the National Committee on Vital and Health Statistics could do to assist with your initiative’s commitment to advancing PMRI standards and terminologies.

NAHDO welcomes NCVHS leadership to:

• Prioritize data development to achieve early success in PMRI implementation. Encourage standardized terminology and data structures  priorities to develop a key set of clinical data elements easily  abstracted from any electronic medical record system. 

• The NCVHS should continue defining minimum core data needs for external reporting and engage in the discussions that articulate the distinction between information that is needed in “real time” versus retrospective data needs.  Some data must be in real time, the additional data elements can be built on to the real time data, assuring non-redundancy of collection of specific demographic and other data elements routinely collected in most public systems.

• Include state health data agency leaders in NCVHS Workgroups and Subcommittees. Assure that public health has a voice in the national standards process and assure public health access to emerging data fields and data sets, recognizing that public health is broader than communicable diseases and surveillance.  State agencies will face unique technical, political, and social challenges in accessing the Electronic Medical Record when it becomes available and will require extra funding and technical assistance.

• Frame the message to the public of the societal need for more sensitive health information and the expected benefits. 

• Adopt recommendations from the Public Health Data Standards Consortium.  The Consortium is a broad-based national forum for building the public health and research data business cases.  Continuing this collaboration will be important to national standards activities for public health and research.

• NAHDO is committed to expanding the number of states that maintain hospital discharge data and considers inpatient, ambulatory surgery, and Emergency Department encounter data as the minimum health care data set for health care utilization studies.  NCVHS support for this “floor” of public reporting will encourage state investments in their data infrastructures.

• Make administrative outpatient data development and standardization a priority across HHS.