# Presentation: 153408

## NHIN / HISPC / SLHIE Joint Conference

***NHIN / HISPC / SLHIE Joint Conference***
**Consumer Preferences & Permissions**
***May 1, 2008***
*Dallas, TX*
**Presenters: Bill Mitchin, Ohio**
**                     ****Kathleen Delaney-Greenbaum, California**

## California, Illinois, North Carolina & Ohio

***California, Illinois, North Carolina & Ohio***
-   Strategically address *intra*state & *inter*state            policy formation around consent permissions.
-   Complete a review of the current literature.
-   Develop templates for research & analysis.
-   Test approaches against pilots or use   cases.
-   Develop a process to vet approaches in other state’s collaborative structures.

**Consumer Preferences & Permissions**

**Notes:**
First 4 bullets are Phase 1

## California, Illinois, North Carolina & Ohio

***California, Illinois, North Carolina & Ohio***
-   Collect information from state vetting onto template.
-   Develop format to represent findings.
-   Disseminate findings & receive feedback.
-   Prepare preliminary report.
-   Develop final report, including:
- Library of consent documents
- Matrix of consent approaches
- Model approaches determined
- Best legal mechanism for interstate exchange

**Consumer Preferences & Permissions**

**Notes:**
Preliminary report is the project methodology, tools and findings.
Model approaches include benefits and risks identified.

## Interstate consent rationale 
Variations in state consent approaches
Lack of standards for data capture
Limited knowledge/agreement of federal law
Delays in treatment/diagnosis
Authentication and access rules
Paper vs. electronic records

- Interstate consent rationale
- Variations in state consent approaches
- Lack of standards for data capture
- Limited knowledge/agreement of federal law
- Delays in treatment/diagnosis
- Authentication and access rules
- Paper vs. electronic records

**Consumer Preferences & Permissions**

## Interstate agreement approach

Thoroughly review the legal mechanisms that allow states to enter into an exchange contract/agreement 

Mechanisms include:
Uniform laws
Model acts
Choice of law
Interstate compact

- Interstate agreement approach
- Thoroughly review the legal mechanisms that allow states to enter into an exchange contract/agreement
- Mechanisms include:
- Uniform laws
- Model acts
- Choice of law
- Interstate compact

**Consumer Preferences & Permissions**

## Uniform Law
A legislative proposal approved by the national Conference of Commissioners of Uniform State Law (NCCUL).  

Proposed to state legislatures by NCCUL for their adoption, usually in its entirety, to uniformly govern a matter of interest among adopting states. 

Would offer states the option to enact the same law governing consent, superseding any conflicting laws between adopting states.

- Uniform Law
- A legislative proposal approved by the national Conference of Commissioners of Uniform State Law (NCCUL).
- Proposed to state legislatures by NCCUL for their adoption, usually in its entirety, to uniformly govern a matter of interest among adopting states.
- Would offer states the option to enact the same law governing consent, superseding any conflicting laws between adopting states.

**Consumer Preferences & Permissions**

## Model Act
A legislative proposal approved by the NCCUL [or similar body] for adoption by state legislatures on a matter of interest to all states.

The difference between a model act and a uniform law is that a model act may or may not be adopted in its entirety.

States frequently modify a model act to meet their own needs or may adopt only a portion of the model act.

- Model Act
- A legislative proposal approved by the NCCUL [or similar body] for adoption by state legislatures on a matter of interest to all states.
- The difference between a model act and a uniform law is that a model act may or may not be adopted in its entirety.
- States frequently modify a model act to meet their own needs or may adopt only a portion of the model act.

**Consumer Preferences & Permissions**

## Choice of Law

A provision that states could adopt to specify which state law governs consent when personal health information is to be exchanged between states with conflicting laws

- Choice of Law
- A provision that states could adopt to specify which state law governs consent when personal health information is to be exchanged between states with conflicting laws

**Consumer Preferences & Permissions**

## Interstate Compact
A voluntary agreement between two or more states designed to meet common problems of the parties concerned.

Compacts on major matters must receive consent of the U.S. Congress as specified in Article I, Section 10, of the Constitution.

Would supersede conflicting laws between states joining the compact.

- Interstate Compact
- A voluntary agreement between two or more states designed to meet common problems of the parties concerned.
- Compacts on major matters must receive consent of the U.S. Congress as specified in Article I, Section 10, of the Constitution.
- Would supersede conflicting laws between states joining the compact.

**Consumer Preferences & Permissions**

## Process
Core state participation encouraged.

Vetting of research with stakeholders in core states.

Secondary states will review preliminary analysis.

LWG members assigned to research and analyze specific legal mechanism. 

Status meetings available via teleconference.

- Process
- Core state participation encouraged.
- Vetting of research with stakeholders in core states.
- Secondary states will review preliminary analysis.
- LWG members assigned to research and analyze specific legal mechanism.
- Status meetings available via teleconference.

**Consumer Preferences & Permissions**

## Lessons learned so far!

***Lessons learned so far!***
-   Collaborate...strategize
-   The trinity...
-   Dynamics & polarization
-   It can be done...we will be successful

**Consumer Preferences & Permissions**

**Notes:**
CA – 6 months!  From a nice neat graphic that laid out what P, S, L & E committees would do...to...the reality. But there’s validation that the strategy of choosing Baseline Policies, Applicability and Consent as the first 3 task groups is being successful. Messy but effective.
Constantly looking for opportunities to collaborate.  HITSP Privacy effort was used by our Privacy Baseline Policies TG and now has become the framework which integrates P, S & E CalPSAB efforts.  
Who, What, Why of exchange...Who is central to Access; What refers to data; Why refers to purpose of the data use.
Consumer – Provider; Privacy – Security perspectives; form barriers & challenges to reaching a dynamic compromise.
Research provides examples and designs, such as Canada Health Infoway, that can...through IT, address opposing polarities (consumer-provider) of the Consent issue.

## California, Illinois, North Carolina & Ohio

Intrastate analysis will be led by California, Kathleen Delaney-Greenbaum, Co-Chair kdelaney@ohi.ca.gov

Interstate analysis will be led by Ohio, Bill Mitchin, Co-Chair wmitchin@isthmusltd.com

***California, Illinois, North Carolina & Ohio***
- Intrastate analysis will be led by California, Kathleen Delaney-Greenbaum, Co-Chair _[kdelaney@ohi.ca.gov](mailto:kdelaney@ohi.ca.gov)_
- Interstate analysis will be led by Ohio, Bill Mitchin, Co-Chair wmitchin@isthmusltd.com

**Consumer Preferences & Permissions**