AHRQ-USHIK: Best Practices & Lessons Learned HIT Standards Committee Vocabulary Task Force J. Michael Fitzmaurice Agency for Healthcare Research and Quality March 23, 2010

Agency for Healthcare Research and Quality (AHRQ) Mission Improve the quality, safety, efficiency and effectiveness of health care for all Americans 2

3 Introduction Goals: To provide and maintain a metadata registry of health information data element definitions, values, and information models which will enable browsing, comparison, synchronization, and harmonization within a uniform query and interface environment. To provide and maintain a metadata registry of health information data element definitions, values, and information models which will enable browsing, comparison, synchronization, and harmonization within a uniform query and interface environment. Build, populate, demonstrate, and make available for general use a data registry to assist in cataloging and harmonizing data elements across multiple organizations. Build, populate, demonstrate, and make available for general use a data registry to assist in cataloging and harmonizing data elements across multiple organizations. Why? The more uniform, accurate, and computerized health data are, the more useful and robust will be AHRQ-funded research findings based on these data, and the more useful will be the tools developed from AHRQ’s research. Why? The more uniform, accurate, and computerized health data are, the more useful and robust will be AHRQ-funded research findings based on these data, and the more useful will be the tools developed from AHRQ’s research.

How is USHIK Organized? As virtual registries USHIK contains all the data elements (DEs) USHIK contains all the data elements (DEs) HITSP Portal—HITSP’s DEs and metadata, and use cases, interoperability specifications, linked to all HITSP documents HITSP Portal—HITSP’s DEs and metadata, and use cases, interoperability specifications, linked to all HITSP documents Patient Safety Portal—AHRQ’s PS Common Format Q/A’s (coded and uncoded) Patient Safety Portal—AHRQ’s PS Common Format Q/A’s (coded and uncoded) ARRA Meaningful Use Measure Metadata Portal— example quality measures and the DE’s associated with their numerators, denominators, inclusions, and exclusions ARRA Meaningful Use Measure Metadata Portal— example quality measures and the DE’s associated with their numerators, denominators, inclusions, and exclusions State All-Payer Metadata Portal—captures states’ all-payer data dictionaries and relates them to HIPAA standards and each others DE definitions and representations State All-Payer Metadata Portal—captures states’ all-payer data dictionaries and relates them to HIPAA standards and each others DE definitions and representations 4#

Information Models Used in USHIK to guide users through the complex relationships used in many “constructs.” Used in USHIK to guide users through the complex relationships used in many “constructs.” Give the strong support of ANSI HITSP by AHRQ, these IM’s make it easier for us to explain what the value of HITSP’s products is and where to find needed information Give the strong support of ANSI HITSP by AHRQ, these IM’s make it easier for us to explain what the value of HITSP’s products is and where to find needed information 5#

1. Services Provided USHIK’s registered authorities (RA’s) submit their DE’s and metadata to USHIK for inclusion USHIK’s registered authorities (RA’s) submit their DE’s and metadata to USHIK for inclusion RA’s include: ASC X12, NCPDP, HL7, ANSI HITSP, AHRQ, and others RA’s include: ASC X12, NCPDP, HL7, ANSI HITSP, AHRQ, and others RA’s are responsible for their DE’s and metadata in USHIK RA’s are responsible for their DE’s and metadata in USHIK Comparison tables of selected DE’s and their metadata can be downloaded in Excel, XML, and pdf format, publicly at ushik.ahrq.gov Comparison tables of selected DE’s and their metadata can be downloaded in Excel, XML, and pdf format, publicly at ushik.ahrq.gov 6#

2. Users Users include HITSP members and staff, vendors, federal program managers and staff, health services researchers, standards developers, standards choosers, and others Users include HITSP members and staff, vendors, federal program managers and staff, health services researchers, standards developers, standards choosers, and others USHIK has begun loading DE info from 79 HITSP documents USHIK has begun loading DE info from 79 HITSP documents Comments from: Lynne Gilbertson (NCPDP), John Donnelly (consulting), and Michael Lincoln (VA) Comments from: Lynne Gilbertson (NCPDP), John Donnelly (consulting), and Michael Lincoln (VA) 7#

3. Services in Active Development Electronic Uploads from RA’s, exploration with X12 Electronic Uploads from RA’s, exploration with X12 New Portals—MUMM and SAPD New Portals—MUMM and SAPD – Pilot projects like these exist on a parallel server for special access until put into production Specification publishing—AHRQ expects to publish its Common Formats for reporting Patient Safety Events for use by PS Organizations in USHIK by the end of this month Specification publishing—AHRQ expects to publish its Common Formats for reporting Patient Safety Events for use by PS Organizations in USHIK by the end of this month Measure Specification—Abt study to analyze quality measure components Measure Specification—Abt study to analyze quality measure components Nursing assessments—AHRQ-funded study of patient fall guidelines. Storing and retrieving certain kinds of knowledge. Nursing assessments—AHRQ-funded study of patient fall guidelines. Storing and retrieving certain kinds of knowledge. Computer Query—machine to machine Computer Query—machine to machine CUI’s—Tagging USHIK’s DE’s with NLM’s CUI’s could all for a broader user search for DE’s from base vocabularies CUI’s—Tagging USHIK’s DE’s with NLM’s CUI’s could all for a broader user search for DE’s from base vocabularies Investigating links to sister agency registries Investigating links to sister agency registries 8#

4. Revision Process Registered Authorities update their data in USHIK as often as they desire if AHRQ has the resources to accommodate Registered Authorities update their data in USHIK as often as they desire if AHRQ has the resources to accommodate RA’s are the experts in their own property RA’s are the experts in their own property – Establishing their own value sets – Making their own revisions Currently ASC X12 is in line for USHIK updates, followed by NCDP and HL7 Currently ASC X12 is in line for USHIK updates, followed by NCDP and HL7 9#

5. Advice Use information models based on use cases as starting places for users to drill down to data elements Use information models based on use cases as starting places for users to drill down to data elements Trade off value against the cost of supplying a service Trade off value against the cost of supplying a service – For example, all those HITSP document links Intellectual property has value, preserve it Intellectual property has value, preserve it Work with users: Save them time and money; give them accuracy Work with users: Save them time and money; give them accuracy A metadata registry like USHIK has much to offer A metadata registry like USHIK has much to offer – Governance – Versioning – Intellectual property protection – Automated knowledge loading and downloading services 10#

Recommendations Develop well-specified, national use cases Develop well-specified, national use cases Specify in great detail the standards and data elements chosen to fulfill the functions of the use cases Specify in great detail the standards and data elements chosen to fulfill the functions of the use cases Designate a metadata registry (preferably USHIK) to receive the chosen data element information Designate a metadata registry (preferably USHIK) to receive the chosen data element information Charge SDO’s to fill gaps and eliminate overlaps Charge SDO’s to fill gaps and eliminate overlaps Consider linkages among existing metadata registries and vocabulary repositories, e.g., USHIK, NLM’s Metathesaurus, CDC’s PHIN VADS, NCI’s CaBIG, CDISC (for clinical trial data elements) Consider linkages among existing metadata registries and vocabulary repositories, e.g., USHIK, NLM’s Metathesaurus, CDC’s PHIN VADS, NCI’s CaBIG, CDISC (for clinical trial data elements) Partner with users Partner with users – VA’s help has enabled USHIK to achieve its deadlines and maintain high quality – USHIK oversight: ANSI HISB, ANSI HITSP, FHA, and USHIK’s partners – USHIK’s partners include: AHRQ, CMS, VA, NCI, DoD, HHS/OS/ASPE 11#

Conclusion A one-stop shop is needed for providing a single source of information about a use case, its DE’s and metadata, and standards from which they come, such as USHIK A one-stop shop is needed for providing a single source of information about a use case, its DE’s and metadata, and standards from which they come, such as USHIK – Why should 10,000 people have to find the path to this information when one good expert can find the path, travel it, take a picture at the end, and make it available to all? All should save resources. USHIK becomes the photo album. AHRQ-USHIK welcomes additional partners and constructive criticism AHRQ-USHIK welcomes additional partners and constructive criticism 12#

AHRQ-USHIK: Best Practices & Lessons Learned HIT Standards Committee Vocabulary Task Force J. Michael Fitzmaurice Agency for Healthcare Research and Quality March 23, 2010