The Interstate Transfer Of Immunization Registry Data: Legal And ...

1. The Interstate Transfer Of Immunization Registry Data:Legal And Technical Challenges Gail Horlick, M.S.W., J.D. Susan Abernathy 2001 Registry Conference July 11, 2001 Little Rock, Arkansas

2. The Challenge Children may live in one state and get medical care in another state Families move frequently State privacy laws and registry laws differ States with strict privacy laws may not be able to disclose information to states that have less stringent protections States have developed registries that use different technologies, resulting in problematic data interchange.

3. Oregon Residents In Washington Registry Oregon residents in Washington Child Profile registry as of 1/7/00: 1,646 kids < 6 years old 434 kids < 6 years old with immunization records 4,163 records of Oregon residents 1,878 records of Oregon residents with immunization history

4. Washington Residents In Oregon Registry Washington residents in Oregon ALERT registry: 22,507 kids less than 6 years old 40,747 kids ages 6-18 2,005 kids >18 Numbers are not deduplicated Immunization information not available

5. Interstate Exchange Of Data: A Legal Overview Few state laws specifically address issue Some states use Memorandum of Understanding (MOU) or Agreement (MOA) Some states exchange information without specific legislative authority, MOU, or agreement Some states obtain legal opinion from Attorney general or other counsel Opinion may permit or prohibit interstate transfer of data

6. State Laws: Maine �The department may share information in the immunization information system with other health care providers or immunization information systems for the purposes described in the rules adopted pursuant to this section.�

7. State Laws: Indiana �The state department may release confidential information concerning individual patient records to the immunization data registry of another state or a provider if the following conditions are met: (1) The other state registry has entered an agreement with the state department. (2) The agreement provides that information that identifies a patient will not be released to any other person without the written consent of the patient.�

8. Memorandum of Understanding (1) 9/99: North Carolina (NC) and Tennessee (TN) governors signed MOU committing administrations to explore development of joint pilot project on sharing child immunization records Outlines confidentiality and security provisions Authorized persons access other state�s information on need to know basis

9. Memorandum of Understanding (2) 11/00: Arkansas (AR) governor signed MOU committing state�s participation to project AR awaiting interpretation from legal counsel and CDC on how privacy rule will impact interstate electronic transmission of immunization data

10. Agreements TN and Mississippi (MS) health department signed agreement MS can query TN registry on need to know basis MS gets read only access MS must keep information confidential County in Maryland signed District of Columbia user�s agreement

11. Tennessee and North Carolina Legal Opinions Legal authorities in TN and NC have concluded that no statute or administrative rule prevents the secured sharing of such health information between in-state or out-of-state providers or authorities.

12. Washington Legal Opinions Washington (WA) legal opinions do not allow disclosure to Oregon (OR) registry without consent or the enactment of specific legal provision Law allows sharing of information amongst healthcare providers regardless of boundary Law does not allow information to be put in another registry as a database Since OR law allows disclosure to schools, access to WA information in OR registry would have to comply with WA laws

13. Oregon Legal Opinion Oregon law does not permit sharing of registry information with other states Legislation addressing this issue may be introduced in the future

14. Next Steps Learn more about what�s working now Conference calls, question of month Learn more about interstate data exchange in other areas e.g. vital records, chronic disease

18. What will Health Level Seven (HL7) do for Registries? Enable communication between disparate systems Standardize registry exchange Enable efficient and cost effective communication Increase provider participation

19. Routing Public Health DataElectronic Laboratory-Based Reporting Improves timeliness of reports Reporting is more complete Less burden on laboratories Allows seamless flow of data to health officials Consistent with the direction of private sector

20. June 1999 � NIP released the Implementation Guide for Immunization Data Transactions using Version 2.3.1 of the Health Level Seven (HL7) Standard Protocol. In this guide, we specifically define the HL7 messages necessary for private and public providers to communicate immunization information to their local or state registry and for registries to communicate immunization information with each other. The purpose of the guide is to provide a consistent, National implementation of the HL7 immunization messages for registries that want to participate in strictly defined record exchange without the optionality normally expected when using the HL7 standard. The need for this implementation guide was identified because registries that were developing HL7 implementations found that when they went to test record exchange with other registries, they each had variations in their messages. As a result, they had to have site specific negotiations to harmonize the different variations with whoever they were trying to exchange with. Furthermore, when registries approached commercial vendors to get them to build the messages in their practice management systems, they were encouraged to come up with one consistent implementation. June 1999 � NIP released the Implementation Guide for Immunization Data Transactions using Version 2.3.1 of the Health Level Seven (HL7) Standard Protocol. In this guide, we specifically define the HL7 messages necessary for private and public providers to communicate immunization information to their local or state registry and for registries to communicate immunization information with each other. The purpose of the guide is to provide a consistent, National implementation of the HL7 immunization messages for registries that want to participate in strictly defined record exchange without the optionality normally expected when using the HL7 standard. The need for this implementation guide was identified because registries that were developing HL7 implementations found that when they went to test record exchange with other registries, they each had variations in their messages. As a result, they had to have site specific negotiations to harmonize the different variations with whoever they were trying to exchange with. Furthermore, when registries approached commercial vendors to get them to build the messages in their practice management systems, they were encouraged to come up with one consistent implementation.

21. Committee for Immunization Registry Standards for Electronic Transactions (CIRSET) Encourage and facilitate the standard implementation of HL7 immunization messages following the Implementation Guide Plan to approach commercial vendors Registry projects are signing letters of intent�many more participate in monthly meetings. Following the completion of the Implementation Guide, the original participants of the workgroup decided that they wanted to form a peer organization to encourage and facilitate the use of the agreed upon implementation of the HL7 standard among immunization registries. CIRSET was formed. Members of CIRSET are asked to sign a Letter of Intent to use the standard implementation of the messages and agree to 1. Adhere to the standards as stated in the implementation guide 2. Periodically review the current CIRSET recommendations and upgrade their registry implementation to be consistent with the recommended standard 3. Allow CIRSET to coordinate any new additions to the standard. 4. Successfully test the registry implementation of record exchange with a designated CIRSET member. Following the completion of the Implementation Guide, the original participants of the workgroup decided that they wanted to form a peer organization to encourage and facilitate the use of the agreed upon implementation of the HL7 standard among immunization registries. CIRSET was formed. Members of CIRSET are asked to sign a Letter of Intent to use the standard implementation of the messages and agree to 1. Adhere to the standards as stated in the implementation guide 2. Periodically review the current CIRSET recommendations and upgrade their registry implementation to be consistent with the recommended standard 3. Allow CIRSET to coordinate any new additions to the standard. 4. Successfully test the registry implementation of record exchange with a designated CIRSET member.

22. What�s Inside? HL7 definitions Basic message construction rules Examples of immunization messages Description of messages, segments, fields, and data types Lists code tables containing values used in messages The Guide contains: commonly used HL7 terms and their definitions. basic message construction rules such as encoding rules for sending and receiveing messages. examples of the immunization transaction messages to: query for a vaccination record respond to a query when multiple matches are found respond to a query returning the vaccination record update a patient�s vaccination record In addition to describing the messages, the guide describes each segment that may be used in an immunization message and then describes each field that makes up the segments and the datatypes used in the fields. An appendix in the guide contains code tables with values for those fields that carry coded elements. For example, the RXA segment carries a field that identifies the vaccine administered and the manufacturer of a vaccine. The values for both of these fields are coded elements meaning that in a computer, a code is carried. In the code table section, there are allowable codes for vaccine products and for vaccine manufacturers that can be used in these fields. The Guide contains: commonly used HL7 terms and their definitions. basic message construction rules such as encoding rules for sending and receiveing messages. examples of the immunization transaction messages to: query for a vaccination record respond to a query when multiple matches are found respond to a query returning the vaccination record update a patient�s vaccination record In addition to describing the messages, the guide describes each segment that may be used in an immunization message and then describes each field that makes up the segments and the datatypes used in the fields. An appendix in the guide contains code tables with values for those fields that carry coded elements. For example, the RXA segment carries a field that identifies the vaccine administered and the manufacturer of a vaccine. The values for both of these fields are coded elements meaning that in a computer, a code is carried. In the code table section, there are allowable codes for vaccine products and for vaccine manufacturers that can be used in these fields.

23. NVPO Funds Communication Tool Move record exchange capability of registries to the next level Provide cost-efficient method Translate non-standard formats to HL7 standard Place in public domain Use by both registries and vendors of provider systems

25. Pilot Projects Currently Participating San Bernardino County (CA) Utah South Dakota Nevada Indian Health Service Possibly in July (new fiscal year for States) Arizona Contra Costa County (CA) Idaho Others

26. 2001 Registry Conference HL7 training by tool developer HL7 testing tool and user training by tool developer Tuesday Session D3 �Ensuring Registry Connectivity Through Standards� Meeting with vendors to encourage HL7

28. Information Flow

29. Immunization Registry as Communicator

31. Resources NIP Registry Website http://www.cdc.gov/nip/registry HL7 Registry Data Exchange Tool JOIN THE PILOTS ! ! http://www.dt7.com HL7 Website http://www.hl7.org NIP Video Tapes on HL7 NIP Implementation Guide for Immunization Data Transactions http://www.cdc.gov/nip/registry/hl7guide.pdf

32. Contact Information Gail Horlick, M.S.W., J.D. Susan Abernathy Program Analysts CDC National Immunization Program 1600 Clifton Rd. NE, MS E-62 Atlanta, Ga. 30333 fax: 404-639-8171 phone: Gail: 404-639-8345 Susan: 404-639-8177 email: gyh6@cdc.gov saa6@cdc.gov