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HIT Policy Committee

Nationwide Health Information Network


Governance Workgroup
Recommendations to HITPC on Nationwide Health Information
Network Governance

John Lumpkin, MD, MPH, Workgroup Chair


Robert Wood Johnson Foundation
Pre-Decisional Draft
Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Workgroup Members

Chair: John Lumpkin, Robert Wood Johnson Foundation


Members:
• Laura Adams Rhode Island Quality Institute
• Christine Bechtel National Partnership for Women & Families
• Carol Diamond Markle Foundation
• Linda FischettiDepartment of Veterans Affairs
• John Glaser Siemens
• Leslie Harris Center for Democracy & Technology
• John Houston University of Pittsburgh; NCVHS
• Michael Matthews MedVA
• John Mattison Kaiser Permanente
• Girish Kumar Navani eClinicalWorks
• Tim O’Reilly O’Reilly Media
• Wes Rishel Gartner

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Discussion Topics

• Workgroup Status
• Recommendations

Appendix (separate deck)


– Governance principles and functions
– NW-HIN as preferred approach
– Federal, ONC and shared responsibilities
– Conditions of Trust and Interoperability
– Validation
– Public comments

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Workgroup Status
• October 2010: Phase 1 recommendations
– NW-HIN* governance principles.
– NW-HIN governance objectives and functions.
• November 2010: Preliminary findings and recommendations
– NW-HIN governance functions and objectives.
– Governance roles and responsibilities.
• December 2010: Final recommendations
– Principles
– NW-HIN as preferred approach
– Federal leadership and shared responsibilities
– NW-HIN Conditions of Trust and Interoperability (NW-HIN COTIs)
– NW-HIN Validation
– Oversight
* The nationwide health information network is in the process of being
renamed. The acronym “NW-HIN” is used solely for convenience. 4
Pre-decisional DRAFT.  For HITPCConsideration – 12/13/10
Recommendations to HITPC

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 1: Nine Sound Principles for
NW-HIN Governance

1. Transparency and openness


2. Inclusive participation and adequate representation
3. Effectiveness and efficiency
4. Accountability
5. Federated governance and devolution
6. Clarity of mission and consistency of actions
7. Fairness and due process
8. Promote and support innovation
9. Evaluation, learning and continuous improvement

See Appendix slides 4 – 8 for more details


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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 2: NW-HIN as Preferred Approach

• The NW-HIN should be an environment of trust and


interoperability for exchange based on NW-HIN
Conditions of Trust and Interoperability (COTIs):
– Should be the preferred approach for exchange of health
information nationwide.
– Should be supported by the federal government with strong
incentives to vigorously promote adoption.

See Appendix, slides 15 – 17 for more details

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 3: Federal Leadership and
Shared Responsibilities
• Federal leadership
– The federal government should :
• Establish fundamental conditions for trust and interoperability and
utilize its full range of authorities to assure compliance.
• Recognize existing state authorities across all relevant domains
and facilitate coordination and harmonization with states and other
entities as needed.
– Federal agencies should participate fully and directly in NW-
HIN and its governance.
– Federal information exchange should be conditioned upon
compliance with NW-HIN requirements.
• Shared responsibilities:
– Reflecting “governance of governances,” other entities should
have specific appropriate roles within the framework.

See Appendix slides 19 – 22 for more details 8


Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 4: NW-HIN Conditions of
Trust and Interoperability (NW-HIN COTIs)
• ONC should establish conditions to assure trust and
interoperability, optimizing broad stakeholder input,
including consumers.
• NW-HIN COTIs should provide a baseline and address
need for variability.
– Some are required and apply across all NW-HIN scenarios.
– Others may be required in particular circumstances.
• The Governance rule should:
– Establish an initial set of NW-HIN COTIs.
– Establish a process for adding and modifying NW-HIN COTIs
• Should provide maximum flexibility for innovation and adaptation.

See Appendix slides 24 – 27 for more details.


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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Potential COTIs: Example Topics

• Privacy • Interoperability
– Fair information practices – Level of conformance
– Consent • Other Policies
– Purposes for exchanging – To promote information sharing
through NW-HIN, secondary – Factors that should preclude an
use, re-identification entity from NW-HIN
• Security • Technical requirements
– Encryption – Secure transport
– Identity proofing – Data lookup and retrieval,
– Authentication – Notification of availability of new /
– Auditing updated data
– Participant access policies – Subject-data matching capabilities
– Data content

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 5: NW-HIN Validation*
• ONC should establish a mechanism to verify that NW-HIN
COTIs are satisfied.
– Balance assurance with cost and burden of validation
– Leverage existing validation methods, processes and entities
where appropriate.
• NW-HIN validation should be required when exchanging
in NW-HIN environment and asserting NW-HIN
compliance.
• There should be various methods of NW-HIN validation:
– Appropriate to specific NW-HIN COTIs and the level of assurance
needed.

See Appendix slides 29 – 33 for more details.

* Validation generally refers to the process of verifying compliance and may include a broad array of
possible methods (e.g. self attestation, testing, certification of systems, accreditation of entities, etc.
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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Recommendation 6: NW-HIN Oversight

• ONC should oversee NW-HIN governance and assure


accountability
– Coordinate between Federal Agencies, state entities and
validation entities. 
– Monitor and highlight innovation
– Address governance barriers
– Provide ongoing evaluation and continuous improvement

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Pre-decisional DRAFT.  For HITPC Consideration – 12/13/10
Discussion

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