# Presentation: 722775

## American Health Information Community Successor – Partnership for Health and Care Improvement 

- Prepared for the Office of the National Coordinator
- June 8, 2007
- Shannah Koss, Sheera Rosenfeld, Greg Fuller, Madeleine Konig, and Sharon Siler

## Vision for the Partnership for Health and Care Improvement: The AHIC Successor

**An interconnected U.S. health system that enables**
** ****real-time, secure, authorized access to health information by **
**each relevant stakeholder, when and where it is needed.**

## The Transition Board and Proposed Model Framework Will Mature into the Partnership for Health and Care Improvement (PHCI)

- Workgroups in *italics* represent current AHIC priorities, but Transition Board may designate different priorities.

## PHCI’s Core Mission Is to Prioritize, Enable, and Synchronize HIT Needs and Activities in the United States

**Consistent with the combined needs of health industry stakeholders, PHCI will:**

**Prioritize**

**Enable**

**Synchronize**

- Prioritize the expanded information needs of the health system
-  Determine health system goals to improve information capabilities that require industry-wide collaboration
*Quality*
*Consumer empowerment*
*Population health*

- Enable the generation, transmission, and use of information at the individual and population level
-  Through delegation, collaboration, and development as needed, identify barriers and solutions to enable needed capability

- Synchronize the array of related activities across the public and private sectors
-  Identify how activities and initiatives are interrelated or interdependent and how to coordinate

*Italics* represent current AHIC priorities, but Transition Board may designate different priorities.

## A Deliberate Phased Approach Is Designed to Facilitate Sustainability of this New Entity

-  **Phase I**

**2007-2008**

**Create HISCs and**
**Nominate Transition**
**Board**
- Create health industry sector councils that will nominate a Transition Board and emphasize/ build industry wide buy-in

-  **Phase II**

**2008- 2009**

**Realign Structure and**
**Priorities**
- Charge new Transition Board to (re)evaluate and rationalize priorities and structure to define direction, increase focus, and foster ownership

-  **Phase III-Maturity**

**2009-TBD**

**Vet, Assess, and Refine**
**Leadership Model**
- Consistent with new priorities and structure, identify roles, responsibilities and key individuals to carry out future PHCI leadership

**A deliberate phased approach will promote stakeholder buy-in, broad representation, and prioritization, and enable long-term success and sustainability.**

## Achieving Short-Term Goals Is Critical to Long-Term Success

**Model development is premised on the notion  that to create a viable successor, critical short-term goals must first be achieved**

**Short Term Goals 2007-2008**
- Maintain AHIC momentum on:
- Visibility
- Public-private HIE support – industry  buy-in
- Continued coordination
- Targeted initiatives
- Create processes that support/ demonstrate transparency, broad representation, equity, trust, and sustain support of subsequent Administrations
- Articulate clear, sustainable value proposition to non-government members with recognition that current government commitment may change

## Multidimensional Value Proposition Will Drive Sustained Participation

## Overview: Stakeholders and Key Framework Components

- Overview: Stakeholders and Key Framework Components

## Health Industry Sector Councils (HISCs)1 Will Support a Variety of Key Roles and Functions 

**Structure**** **
- Voluntary councils represent broad array of stakeholders; each has two co-chairs elected by HISC members
**Roles and Responsibilities**
- Create a standard mechanism for industry interaction and engagement with Transition Board and PHCI
- Establish manageable association relationships and foster consensus building
- Maintain open processes to allow all related associations to participate
- Provide ongoing industry-wide feedback regarding Transition Board and PHCI agenda/recommendations
- Provide a vehicle for state and local government to inform national efforts based on local realities
- Nominate members to Transition Board and workgroups
- Independently propose health information needs and capabilities with a clear mechanism for review and consideration in the prioritization process

- 1Modeled after Industry Sector Councils in the Critical Infrastructure Partnership Advisory Council (CIPAC)
- Where notable and informative, we indicated a relevant case study model. Detail on the specific case studies is provided in the appendix.

## HISCs Provide a Structure that Promotes Broad Stakeholder Representation and Direct Input to the PHCI

**Health Industry Sector Councils***

**Long Term Care**

- Alliance
- AHCA
- AAHSA
- NAHC

**Providers**

- AAFP
- ACP
- AMA
- AMGA
- ANA
- MGMA
- NACDS
- AphA
- NCPA

**HIT and HIE**

- eHI
- HiMSS
- NaHIT
- AHIMA
- Markle
- AMIA
- NAHDO

**Labs and Radiology**

- ACLA
- ASTRO
- ACR

**Employers**

- NBCH
- NBGH
- HLC
- Business Roundtable
- WBGH
- Leapfrog

**Consumer Groups and Consumer Advocates**

- AARP
- NCL
- Consumers Union
- Consumer Coalition for Quality Health Care
- CAPS

**Payers**

- AHIP
- BCBSA
- Small Business Health Plans
- NCQA

**Drugs and Devices**

- PhRMA
- BIO
- AdvaMed
- MDMA
- AAMI

**Institutional Providers**

- AHA
- FAH
- NACHRI
- NACHC
- AAMC
- Joint Commission

**State and Local Government**

-  NGA
-  NCSL
-  APHA
-  NACCHO
-  NASMD

- *These are illustrative listings only and not intended to be exhaustive.
- Please refer to the complete listing of names/acronyms on slides 49 and 50.

## Affiliate Organizations with Related Objectives Will Play an Essential Role in Supporting the PHCI

**Structure**** **
- These organizations are capable of supporting other needed development components (e.g., research, standards development, certification, quality metric specifications)
- Likely affiliates could include CCHIT, HITSP, NQF, AQA, HQA, NGA, IOM, NCQA
- Affiliates could be asked to form ad hoc workgroups or technical advisory panels to focus on key areas (e.g., Quality)
**Roles and Responsibilities**
- As the Transition Board determines priorities and gaps in current information capabilities, it should also consider what these affiliate organizations could accomplish
- Offers an alternative to creating a new workgroup or duplicating efforts already underway
- Transition Board should develop memoranda of understanding with affiliate organizations that establish the relationships and expedite consideration of PHCI recommendations
- Affiliates should be recognized as expert resources—input should be regularly sought

- MOU: memoranda of understanding

## Federal Entities Are Key to PHCI’s Future Value Proposition and Influence

**AHIC has highly visible government influence**
- Top level Administration commitment, leadership, and participation
- FACA Charter
- Substantial government promotion

**Ensuring PHCI’s influence will require:**
**Near Term**
- 2008 AHIC and AHIC government members
- Federal Health Agencies pursuant to President’s EO
- ONC
- NCVHS
- Government membership
**Long Term**
- Financing
- Legislative mandate*

**Sustained value will depend on continued high-level commitment from the next Administration. **

- FACA: Federal Advisory Committee Act
- EO: President’s Transparency Executive Order
- *Legislation mandating Secretary level participation and consideration of PHCI output would be a more direct mechanism to ensure government involvement, but government employee participation is possible without legislation.

## Each Federal Entity Will Play a Different Role and Offers Differing Value

**Government Entity**

**Role and Value**

**2007 AHIC Government Involvement**

- Provide a near-term mechanism by which Transition Board recommendations are accepted and shepherded throughout the federal health system
- Support establishment of sector councils

**Interagency Council for Health Care Improvement (CHCI)**

- Through a new Executive Order, create the Interagency CHCI that would maintain the federal components of the AHIC to advance similar goals on behalf of the Federal government and explicitly work as a counterpart to the PHCI

**Federal Agencies Subject to Executive Order (EO)**

- All agencies subject to the transparency EO shall incorporate recommendations from Transition Board and PHCI consistent with the EO and CHCI guidance

**ONC**

- Work with agencies to facilitate government-wide adoption
- Work with contractors to implement and advance agreed upon standards, supporting pilots, and recommended policy
- Channel funding, existing contracts, and staffing as needed and appropriate

**National Center for Vital and Health Statistics (NCVHS)**

- Upon AHIC’s transition, provide a mechanism to direct recommendations to Secretary*
- Provide ongoing support for public hearings and other FACA processes, offering technical expertise as needed

- *This role may require a change in the NCVHS charter

## Clear Delineation Between the PHCI and Government Roles and Responsibilities Is Necessary

- The PHCI will:
- Assume the majority of AHIC’s roles and responsibilities
- Prioritize, enable, and synchronize needed activities to advance an interconnected U.S. health system
- Be realigned through a collaborative process with HISCs, Affiliates, and the general public
- Government entities, particularly those with related or overlapping missions, will:
- Serve as facilitator during the transition from AHIC to Transition Board
- Participate in the PHCI organization through the representatives that are voting members*
- Be tasked with receipt and careful consideration of all recommendations from the PHCI (particularly members of the Interagency Council for Health Care Improvement )
- Commit to advancing the recommendations of the PHCI as appropriate for their respective programs, as stewards of health information and health policy
- Offer funding, in-kind support and technical expertise when feasible to help advance the PHCI mission and workgroup charges

- *Under the National Technology Transfer and Advancement Act of 1995 and OMB Circular A-119, government employees may participate on the boards of outside organizations that are voluntary consensus standards organizations.  Modeled after NQF.

## Achieving Mission Also Requires State and Local Input and Coordination

**To achieve the vision for interoperable electronic exchange of health information nationwide, PHCI must have a mechanism to ensure input from state government and community HIEs.**

## Key Relationships and Processes Will Ensure the PHCI is Coordinated with States

**State and Local Government HISC**

**Purpose**:
- Provide board/workgroup nominations, input, ongoing feedback on recommendations
**Structure**:
- Association oriented
- Representative of governors, state legislators, Medicaid, public health, and local health officials

-  **Standing Group****	**

**State****Affiliate**

**Purpose**:
- Channel to help PHCI address state-level HIT issues including barriers to interoperability, privacy and security issues, and state law and regulatory barriers
**Structure**:
- Standing Affiliate devoted to state policy and legislative issues
- Recommended entity is NGA (State Alliance for e-Health)

-  **Standing Group****	**

**State and Community Public Forum**

**Purpose**:
- Achieve regular input from array of state and local representatives
**Structure**:
- Semi-annual, national conference
- Issue- or stakeholder-oriented breakout groups

-  **Meets Twice a Year; **
**Attendees Vary**

**PHCI will coordinate and direct workgroups to state-based input mechanisms.**

## Transition Board and Detailed PHCI Phases

## Fostering HISC Creation Is a Critical First Step 

**Purpose**
- HISCs provide broad representative stakeholder input starting with the nominations for Transition Board membership
**Processes**
- AHIC members work with sector associations to hold town hall meetings and foster HISC formation
- Interim principles established for HISC operations based on open and inclusive processes
- Town hall meetings conducted for individuals, companies, organizations, and associations that represent the designated sectors
- Five meetings held across the country, with virtual component, to reach potential HISC membership; break out sessions held for individual sectors
- Once HISCs formed, each develops a list of two to three Transition Board nominees, ensuring equitable balance in industry representation and transparent selection
- Two senior project management staff will hired to oversee the Phase I processes

- *The majority of the remaining slides have an “indicator bar” in the top right hand corner to indicate to the reader the phase in which the activity/content is relevant.  Some slides refer to activities in more than one phase in which case, more than one bar is highlighted.

## Initial Transition Plan Ensures Selection of Representative Board of Directors*

**Transition Board Selection Steps – Complete by End of First Quarter 2008**
- Secretary Leavitt selects1 one nominee from each set of HISC recommendations – ten members total
- Congressional leadership from each chamber appoint1 two members – four members total
- Government representatives selected from current AHIC government membership based on recommendations from non-federal AHIC Commissioners and input from selected HISC nominees – four members total
**Begin CHCI Transition**
- Current AHIC is replaced by Interagency Council for Health Care Improvement (CHCI) to clearly endorse the role and activities of the Transition Board and ultimately PHCI

- *More detail provided in Charter and Bylaws document.
- 1Modeled after NCVHS

## Financing of Phase I Transition Is Heavily Dependent on Federal Government

** ****Phase I Cost Estimate: $1-2 million**

**2008 HHS/ONC AHIC Budget **

- HHS/ONC funds are earmarked to support 2008 AHIC activities and staffing
- A portion of these funds would be funneled directly to Transition Board to support transition from the AHIC; Executive Director and Executive Committee would oversee monies

**Existing Government Contracts**

- ONC has contracts in place to support the AHIC meetings, workgroups, and relevant preparation and follow-up
- These contracts and contractors could support the necessary town hall meetings (e.g., meeting planning), requisite HISC meetings, Transition Board meetings, including preparation of materials, audio and web conferencing capabilities
- For 2008, monies would continue to flow from ONC directly to contractor to support PHCI

**Federal Grants **

- Grants should be solicited and established in 2007/2008 with a firm commitment for 2009
- Contributions from HHS (including CMS, CDC, NIH & AHRQ), DoD, and VA1
- Grant funding, which should be 50% of PHCI financing for the first five years2 will support administrative and operating expenses related to implementation (e.g., meetings, website, travel, staffing)

- 1Modeled after Remediation Technology Development Forum (RTDF)
- 2Modeled after SEMATech

## Financing of Phase I Transition Is Heavily Dependent on Federal Government (cont’d)

** ****Phase I Cost Estimate: $1-2 million**

**Federal “In-kind” Support**

- HHS to provide three FTE’s1 to support AHIC transition period
- ONC to provide staffing support for meetings and preparation of materials similar to current AHIC support
- HHS to host website, post materials and public notices, and provide technical support as needed through the full transition period

**Private Sector “In-kind” Support**

- Participating associations and organizations (through the HISCs) could provide meeting space, conference call numbers, web-conferencing capabilities, food and beverage for meetings, and other administrative support as needed for the town hall and HISC meetings

- 1Modeled after Critical Infrastructure Partnership Advisory Council (CIPAC)
- FTE: Full Time Equivalent

## Key Role of Transition Board Is to Realign Structure and Priorities for Successor Body

**Purpose**
- Transition Board will re-evaluate the structure and priorities of current AHIC to determine what, if any, realignment is necessary to promote and maintain industry support/buy-in
- Board will prioritize future PHCI activities using an open and transparent process
**Processes**
- Board and HISCs will identify affiliate organizations that should play ongoing substantive role in advancing an interconnected health system (e.g., CCHIT, HITSP, NQF, IOM, NGA)
- HISCs and Affiliates will be engaged in prioritizing health system goals and related information capabilities
- Board and HISCs will determine the future PHCI workgroup structure and processes
- Consider how the PHCI will coordinate across workgroups and with Affiliates
- Develop process for how the PHCI establishes and launches subsequent priority workgroups
- PHCI will develop additional workgroups based on needed information and prioritized goals
- Input, discussion, decision, and recommendation processes use FACA as a model for openness

## First 90 Days of Transition Board Is Critical to Establishing Governance, Priorities, and Necessary Staffing

- Create five member Executive Committee from Transition Board
- Determine initial staffing roles and responsibilities
- Seek interim voluntary staff from current AHIC and ONC
- Formalize support role of ONC Director and staff if legal and feasible
- Solicit in-kind staffing support from HISCs and Affiliates
- Identify Affiliates with synergistic capabilities and expertise (revisit semi-annually)
- Prioritize areas of health information focus
- Establish MOUs with HISCs and Affiliates and solicit input on priorities
- Identify and position workgroups that should begin work during transition period
- Consider current and new focus areas and prioritize new and current improvement areas
- Consider current and new infrastructure capabilities
- Evaluate functional requirements for technology solutions
- Create ongoing process for identifying priority health system information needs
- Begin holding monthly meeting with updates from workgroups once established

## Transition Board Officers Responsible for Generating Early Momentum and Ensuring Sustained Support 

- Two Co-Chairs, Vice President for Membership and External Affairs, Vice President for Finance, and Vice President for Operations will form the Executive Committee of the Board
-  These five officers will be elected by the board from among its members
- Co-Chairs Selection: One will be selected from the private sector and one from federal government (senior agency official preferred)
- Required to devote at least 25 percent of their time during the first 90 days
- Vice Presidents shall serve on at least a one-half time basis for the first 90 days
- After that, they serve on an as needed basis until the permanent board is established

## Staff Will Be Integral Part of Transition Board Operations and Must Facilitate HISCs and Affiliate Relationships and Support Workgroups

- Transition Board staff will include 8-11 FTEs which also includes 3 ONC/HHS detailees
- Staff to support workgroups and facilitate APA*-like process for public transparency
- At the request of the Board, federal agencies may detail employees to act as PHCI staff members
- Executive Director with Deputy Director support will ensure all meetings comply with the principles of openness and inclusiveness, provide oversight of other staff members, and work with VP for Finance to develop financial plans and budgets
- General Counsel will work with the VP for Membership and External Affairs to negotiate and draft the MOUs with the Affiliates and other external organizations
- Staff will increase in Phase III to support additional PHCI workgroups and activities as necessary

- *APA: Administrative Procedures Act

## After the First 90 Days, the Board Must Focus on its Overall Agenda, Milestones, and Formal Structure 

**Transition Board Tasks Prior to Sunset**
- The three-year plan should be based on input from across the industry and should include:
- HISC and Affiliate input
- General public input
- Consultation with CHCI
- Various public communications forums (e.g. monthly meetings, RFI responses, or open calls for comments)
- The Transition Board’s remaining mission is to delineate a detailed three-year plan that will include:
- Develop three-year agenda, milestones, and timelines
- Launch priority workgroups based on public feedback
- Delineate explicit and discrete goals
- Draft a recommended long-term PHCI structure with a formal board and workgroups building off public input to date and current interim operations
- Consider hearings when appropriate, potentially hosted by affiliates (e.g., NCVHS)
- Propose sunset for Transition Board as part of realigned structure

## Private Sector and Federal Government Need to Play Key Roles in Financing PHCI Prioritization and Realignment

** ****Phase II* Cost Estimate: $5-6 million annually**

**Federal Grants**

- Grant funding continues to support administrative/operating expenses, year three of five total1
- Grant funding should be 50 percent of PHCI financing for the first five years to support administrative and operating expenses related to implementation (e.g., meetings, website, travel, staffing)**

**Contribution from HISC Association Dues**

- Participating HISC Associations will donate a small percentage of total membership dues to participate
- While the majority of the funds will support PHCI operations, a portion of the funds will be used to directly support the industry specific HISC activities (e.g., meetings, calls, materials, staff)

**Federal “In-kind” Support**

- HHS continues to detail three FTE’s to support PHCI transition period
- ONC continues to provide volunteer staff support for activities as needed
- HHS continues hosting of website, provides use of meeting rooms as appropriate, provides for use of conference call number, and jointly supports PHCI relevant research

**Private Sector       “In-kind” Support**

- Participating associations and organizations (through the HISCs) provide meeting space, conference call numbers, web-conferencing capabilities, food and beverage for meetings, and other administrative support as needed for HISC meetings, Transition Board and Executive Committee meetings

- *The expectation is that phase II will run from Q2-2008 through Q3-2009.
- 1Modeled after SEMATech and Critical Infrastructure Partnership Advisory Council (CIPAC)
- **Significant federal funding in initial years will encourage private sector to participate and create a sense that their contributions are being well leveraged (1:1 match).

## Health System Improvement Workgroups Establish a Focused Agenda for Achieving Goals

**Structure**** **
- Workgroups will consist of HISC representatives, as approved by the Board – every workgroup may not need representation from every HISC
- Interagency CHCI and government Transition Board members will recommend appropriate government participants
- New workgroups with comparable charges to existing AHIC workgroups should consider current AHIC workgroup members as possible nominees
- Process seeks to ensure balanced representation such that no one sector or set of aligned sectors have undue influence
- Workgroups will determine needs for additional technical and legal expertise
- Workgroups, with approval from the Board, may look to Affiliates, government entities (e.g. NCVHS), or other appropriate organizations to form technical advisory panels (TAPs)

- CHCI: Interagency Council for Health Care Improvement
- Workgroups in *italics* represent current AHIC priorities, but Transition Board may designate different priorities.

## Health System Improvement Workgroups Establish a Focused Agenda for Achieving Goals (cont’d)

**Roles and Responsibilities**
- Set specific agenda for the identified priorities/goals established by the Transition Board
- Identify information needs and capabilities critical to specific health system improvement workgroups and focus areas
- Determine related objectives and initiatives currently led by public and private initiatives and organizations
- Solicit input from HISCs and Affiliates as appropriate and necessary to inform the above action areas
- Define:
- Desired capabilities, i.e., what must be enabled to meet information needs and specific IT capabilities
- How current activities support/address these specified needs
- What questions can be addressed by HISCs and Affiliates
- What remaining tasks need CHCI support (e.g., policy guidance,pilot solicitation)
- Achievement milestones by which the Transition Board and public will measure progress
- Solicit public comment on the priorities, existing initiatives, outstanding issues, and other relevant questions noted above
- Delegate infrastructure needs to appropriate infrastructure enabling workgroups or Affiliates

## Infrastructure Workgroups Enable Cross-Cutting Support to Achieve PHCI and Health System Improvement Workgroup Goals

**Structure**** **
- Similar public-private representation to the Health Systems Improvement Workgroups, yet technical nature may warrant members with more technical expertise
**Roles and Responsibilities**
- Inform the need for unique technical and legal expertise with advice from HISCs and Affiliates
- Define priorities and gaps in infrastructure requirements based on Health System Improvement workgroup activities and technical dependencies
- Serve as liaisons to Affiliates that specialize in infrastructure and coordinate with Affiliates, government entities, and TAPs as needed to complete identified goals
- Offer cross-cutting support to Health System Improvement Workgroups to highlight where their goals or needs overlap, conflict, or are interdependent
- Establish achievement milestones by which the Transition Board and public will measure progress

- Workgroups in *italics* represent current AHIC priorities, but Transition Board may designate different priorities.

## The Workgroup Transition and Target Areas Will Inform the Direction and Priorities for PHCI

- If new workgroups are comparable to or overlap with the current AHIC workgroups:
- Near- and long-term charges and work to date should be reviewed as part of the process of prioritizing new workgroup areas
- Existing workgroup activity should inform agenda setting for priority information needs and determine whether the new workgroup will continue with the same goals and tasks
- Membership of the workgroups will be determined by:
- Consideration of current members (possible advisory role)
- Inclusion of a minimum of two federal representatives; maximum of 50 percent of total representation
- Soliciting nominees from HISCs
- Assessing need for technical and legal expertise
- Transition from current AHIC workgroups to new PHCI workgroups should:
- Determine how best to transition or complete work by year end of 2008 when overlapping or comparable workgroups exist
- Give deference to the new workgroup with similar goals/charge
- Acknowledge importance of establishing the PHCI in a timely manner

## Workgroup Operations Are Designed to Ensure Transparency and Public Participation 

- Workgroups must elect two Co-Chairs
- Workgroup members may solicit recommendations from HISCs, Affiliates, the Transition Board, and the public, as necessary and appropriate
- Workgroups should generally follow the principles of the FACA to ensure meetings and actions are transparent to the public
- For example, workgroups must hold open meetings whenever discussing specific recommendations
- Workgroup meetings should be publicly announced at least 30 days prior to meeting
- There must be a public comment period at each open meeting
- Workgroups can hold closed meetings if they are preliminary discussions or to allow candid deliberation and shall make all presentations and materials circulated at such meetings available to the public

## Creation of TAPs Will Offer Greater Technical Expertise to Support Workgroups, Transition Board, and PHCI

- Development of a technical advisory panel (TAP) anticipates a sustained need for technical input or greater research on a targeted issue
- Use of a TAP will not eliminate the need or value of seeking input through a focused meeting or RFI response
- Board may determine if a “standing” TAP is needed for specific purposes or to support relevant workgroups’ issues (e.g., network computing or EHR functionality)
- Workgroups can recommend to the Board [for approval] that a TAP be created to address specific issues (e.g., quality metrics, identity proofing technologies, genetic data banks)
- TAP membership should be broad and balanced with the needed expertise
- Affiliates and HISCs should be leveraged in forming TAPs and selecting members
- If a HISC is not represented on a TAP and they specifically have someone with the requisite expertise, efforts should be made to include the individual

## A Standing TAP on Community HIE Offers Ground Level Experience to Enhance the Local ‘Voice’ and Inform the PHCI 

**Purpose**
- Recognize existence and emergence of multiple and different community-driven HIE initiatives
- Leverage an array of established technical experience and expertise
**Structure**
- Representation from mature and emerging state-level and community-based HIE initiatives and RHIOs (e.g., technical architects, standards experts) with overlapping appointment terms not to exceed 3 years
- Standing body to be established in advance of workgroup priorities
- Acknowledges ongoing need for community-level, technical input, and coordination
**Roles and Responsibilities**
- Provide transparent multi-state input on technology, data standards, and other technical issues
- Ensure that the national collaborative effort is informed by local, state, and regional solutions
- Be recognized as an on-the-ground expert resource
- Respond to needs and priorities of Transition Board, Workgroups, and PHCI on all technical issues
- Coordinate with Affiliates (e.g., HITSP) on standards, data solutions, and policies, and other issues as appropriate

## The Need for Greater Collaboration Among HIT and Quality Activities Highlight the Workgroup Role*

**A Quality workgroup would serve as the vehicle through which the PHCI addresses existing issues and challenges.  It will foster collaboration among existing entities and provide coordination through governance and oversight of data aggregation,** **quality measurement, and public reporting.**

- The existence of multiple, interrelated Quality and HIT issues warrants PHCI focus in future activities:
- Continued evolution in the understanding of methods for continuous quality improvement and improved health outcomes
- Need for real-time data at point of care
- Need for automated data collection and data aggregation to ease reporting
- Development and revision of measures and technology that enables the collection and diffusion of relevant information
- Injects information back into the system and informs future collection efforts
- Highlights how a provider is meeting performance measures
- Multiple current and emerging efforts are addressing these issues:
- National Quality Forum
- Quality Alliance Steering Committee
- AHRQ 1013 Comparative Effectiveness Research program
- Potential national health data stewardship entity; potential comparative effectiveness entity
- Disconnects, however, still exist and cause problems for the system:
- Between the activities of national and local initiatives
- Between what information is being collected and what information is needed

- *Other workgroups would be tasked with similar roles and affiliations specific to their focus.  Details on the Quality Workgroup is provided in response to ONC’s request in Task 4.

## Quality Workgroup Is Designed to Promote Oversight, Collaboration, and Coordination Across HIT and Quality Issues

- Quality Workgroup will foster relationships with similarly missioned organizations, creating a formal and informal network:
- National organizations, such as NQF, NCQA, Leapfrog, and the Quality Alliance Steering Committee would serve as affiliates to the PHCI
- Technical Advisory Panels (TAPs) will be sought and established1 to gain needed technical expertise regarding quality improvement, performance metrics, and state and local HIE initiatives
- HISCs and quality-related pilots (e.g., Value Exchanges) will provide real-world experience to inform the process
- AHRQ may require Value Exchanges to share lessons learned and experiences
- Grouping of organizations will afford information to the workgroup as it devises its agenda to address gaps in data collection, aggregation, performance measurement, quality reporting, and translation
- Once the agenda is created and tasks delegated to Affiliates, these organizations will also provide feedback to the workgroup to help it to assess the relative success of its efforts
- The iterative and consistent exchange of information across activities will facilitate a coordinated framework overseen by the PHCI and Quality Workgroup and will ensure open collaboration and coordination

- 1 Modeled after the Remediation Technologies Development Forum (RTDF)

## Quality Workgroup Example: Improved Medication Adherence Through HIE

**The detail below provides an example to illustrate the collaboration and coordination **
**process among the workgroup and coordinating organizations.  This particular example **
**focuses on medication adherence to highlight the specific tasks and interactions included **
**in the workgroup activity.**

**Prioritize Key Focus Areas: **Through a vetting and prioritization process, the workgroup identifies three to five quality-related priority issues and selects a priority area on which to focus (e.g., medication adherence is selected as a priority issue)
**Information Gathering: **Workgroup collects information to gain a comprehensive understanding of activities to date and needs at the local, state, and national level
- Utilize TAP members and their respective HIE and state affiliations to generate “quick learning” environmental analyses (e.g., several RHIOs using medication lists as initial information exchange)
- Confer with affiliates to leverage expertise and findings (e.g., NQF’s* Improving Use of Prescription Medications *program)
- Partner with quality-related pilots/programs and chartered Value Exchanges* and Learning Networks to understand available data resources
- Solicit input from HISCs

- *When Value Exchanges are operational

## Quality Workgroup Example: Improved Medication Adherence through HIE (cont’d)

**Gap Analysis: **Information gathering enables the workgroup to identify where rich information exists and areas where insights/experiences are limited
**Agenda Setting: **Workgroup devises an agenda and mechanisms to identify and address issues relating to information gaps, exchange barriers, data standards, and quality metrics, and develops an associated timeline for activity
**Implementation: **Workgroup distributes tasks (pending Board approval) among affiliates, TAPs, Value Exchanges, and others in order to meet the agreed upon goals
- The goal and outcome of this process can take a variety of forms:
- Recommendations for action to the PHCI;
- Agreement among the organizations to act, each with its own delegated role; and
- Acknowledgement of the need for further information and data collection and the implementation of pilots
**Recommendation: **PHCI would forward accepted recommendations to federal Interagency CHCI

## Final Phase of Model Reconfirms Direction for PHCI and Establishes Leadership for the Future

**Purpose**
- Transition Board will use HISCs, Affiliates, and Federal entities as part of the vetting process to validate the realigned structure and priorities to:
- Gain input and acceptance of the revised PHCI design
- Determine whether the newly defined structure and priorities require a change in Board composition
- Formalize public vetting process for agenda, milestones, and realigned structure
**Processes**
- Solicit input on whether and how Board composition should change to ensure balance
- Solicit comments on the revised design and determine need for further revision
- Seek nominations for Board changes and implement new Board elections consistent with new structure recommendations, balanced similarly to the Transition Board membership
- 10 broad industry stakeholder representatives
- 4 Administration representatives
- 4 congressional designees

## Expiration of Transition Board Prompts Open and Inclusive Process for New Nominations

**New Board Nominations and Initial Tasks**
- HISCs would provide two to three nominations for the Transition Board; current Board members can be renominated
- Transition Board will vote on the nominees submitted, members who are renominated are recused from voting on nominees from their sector
- Congress can maintain or redesignate its appointees
- Federal agency representatives can be redesignated by the Executive Branch, CHCI, and ONC
- A transition team/committee will be appointed from the Transition Board and the new Board to develop and implement a 90-day transition plan
- First order of business – review and finalize priorities, structure, and workgroups based on the publicly vetted materials and response
- Assess status of progress and determine staffing needs and mechanisms for meeting these needs

## Mature PHCI Will Also Offer Various Operational Services that Support the NHIN

**Structure and Purpose**
- Newly staffed subcomponent of PHCI would provide operational review services for the mature organization
- The operational function would have separate and additional staff with legal, policy, and data analysis expertise
- Oversight and certification of NHIN activities include:
- Policy and legal underpinnings of community based HIE as opposed to technical infrastructure
- Standards and processes regarding access to national level secondary data through the NHIN
**Processes**
- Establish policy for evolving integration and interoperability of local and regional health information networks and national data access
- Conduct reviews, evaluations, and certification of participating entities to ensure that the necessary agreements/contracts are in place and the applicant is a “trusted” NHIN participant
- Provide certification of secure interoperable services that meet national exchange standards
- Review request for access to national level data through the NHIN, rather than from individual data sites or certify designees authorized to review requests for national level data access and utilization

## Private Sector Sponsorship, Association Dues, and Operational Fees to Provide Financing for Sustainable Revenue Model

| Funding Mechanisms | Description |
| --- | --- |
| Federal Grants  | Grant funding continues to support administrative/operating expenses, year three of five total |
| Contribution from HISC Association Dues | Participating HISC Associations donate small percentage (i.e., 1⁄2 -1 percent) of total membership dues 
While the majority of funds support PHCI operations, a portion of funds are used to directly support the industry specific HISC activities (e.g., meetings, calls, materials, staff)
This represents an ongoing fee to participate in and impact PHCI activities providing a clear role and opportunity to engage with the HISC and PHCI |
| Operational Fees for NHIN Oversight | Applicants would be required to pay a registration fee to apply and then a bi-annual certification fee once they are approved1 
Fees charged for review and approval of data access requests and for certification of NHIN data access review organizations
Fee scale would differ by size of population (e.g., CalRHIO versus Rhode Island RHIO) |
| Private Sector       “In-kind” Support | Participating associations and organizations (through the HISCs) continue to provide administrative and other support as needed (e.g., meeting space) 
Vendors and other service organizations may continue to offer time, technology, and expertise |

** ****Phase III Cost Estimate*: $15-16 million annually**

- *This increased funding ties to the new board and expanded staffing needs.
- 1Modeled after Public Company Accounting Oversight Board (PCAOB)

## Private Sector Sponsorship, Association Dues, and Operational Fees to Provide Financing for Sustainable Revenue Model (cont’d)

| Funding Mechanisms | Description |
| --- | --- |
| Other Federal Funding | Annual appropriation of HHS discretionary funds targeting a specific initiative through a Congressional line item |
| Sponsorship Opportunities: Longitudinal and Event Specific | Individual companies, foundations, and organizations may participate financially by underwriting issue-driven projects, program, and pilots
Donors receive recognition for sponsorship role with corresponding labels (e.g., platinum sponsor, gold sponsor, bronze sponsor)
Longitudinal specific examples: Taskforce on specific issue area, focused pilot project
Sponsored by multiple entities to ensure broad relevance and participation (versus a single organization)
Event specific examples: Sponsorship of meeting, conference, workshop
Opportunities for multiple organizations to sponsor events would include recognition in some format (e.g., placard, banner, logo on materials) |

** ****Phase III Cost Estimate: $15-16 million**

## PHCI’s Financing and Cost Components Will Evolve as the Organization Matures

**Evolving Financing**
- Initial phases of model are heavily dependent on federal funding to establish PHCI governance, membership, priorities, staffing, and supporting activities
- Significant portion of explicit federal funding, such as grants and contracts, as well as in-kind (e.g., FTE’s, meeting space, website), will transition out in year three
- From year three into maturity, revenues will be more heavily dependent on fees from membership, sponsorship, and operational oversight
**Core Cost Areas **

- ED: Executive Director

| Director and Support Staff 
Launch and Maintenance of Website
Audio and Webcast support
Public Board/PHCI Meetings
Town Hall and Ongoing HISC Meetings
Legal Counsel | State Meetings
Workgroup Meetings
Board Compensation and Insurance
Contracts, Pilots, and Research
NHIN Operational Services
Administrative and Office Requirements (e.g. computers, phone, internet) |
| --- | --- |

## The PHCI Should Work Closely with Legal Counsel to Navigate Several Issues

**Nonprofit Status**
- The VP Operations and Executive Director should take steps to begin the process for incorporating the PHCI as a nonprofit corporation
- Transition Board will decide where PHCI should incorporate, but District of Columbia seems a natural choice
- Outside counsel should be retained to navigate the tax issues and draft articles of incorporation and bylaws
- PHCI will likely be incorporated as a tax-exempt 501(c)(3) organization, but other options should be considered in collaboration with outside counsel
**Government Employee Participation **
- Government employees are permitted to participate on boards of outside organizations that set standards that are likely to be adopted by the federal government1
- Because the PHCI will be endorsing HIE standards that the federal government will likely adopt, it is crucial to have federal representatives on the board to ensure the government’s interests are adequately represented2

- 1 Pursuant to National Technology Transfer and Advancement Act of 1995 and OMB Circular A-119
- 2 Modeled after National Quality Forum (NQF)

## PHCI Timeline – Key Tasks and Phased Transition

## In Maturity, the PHCI Has Used a Broad and Inclusive Approach To Redefine Priorities, Target Areas, and Supporting Infrastructure

## PHCI Model Offers Multiple Opportunities to Enhance AHIC

| Partnership for Health and Care Improvement |  |
| --- | --- |
| Broad Representation | Health Industry Sector Councils |
| Equitable Balance | HISC structure and input and Board alignment process |
| Transparency in Membership Selection | Visible process with broad stakeholder involvement |
| Open Public Access | Public meetings; open decision making process |
| Transparency in Decision-making | Open processes with HISC participation |
| Trusted | Designed for maximum buy in |
| Meaningful Value Proposition | Government levers and industry influence |
| Leverage Resources and Capabilities | Affiliates, government, and industry engagement |
| Attract/Maintain Diverse Membership | HISC and government relationship |
| Focused Agenda | Prioritization process |

## The Charter and Bylaws* Outline the Following Functions and Processes:

**Selection and Appointment of Transition Board**
**Description of Health Industry Sector Councils**
**Duties of Transition Board**
**Roles of Transition Board Officers **
**Formation and Operation of Workgroups**
**PHCI Staff**
**Meeting Procedures**
**Voting**
**Duration and Termination **
**Selection and Appointment of Permanent Board **
- *The draft Charter and Bylaws are included as a separate document.

**The Charter and Bylaws* Outline the Following Functions and Processes:**

- Draft Charter and Bylaws for Transition Board and PHCI**Phases I, II, and III**

## Acronyms

| CCHIT: Certification Commission for Health Information Technology | AHCA: American Health Care Association |
| --- | --- |
| HITSP: Health Information Technology Standards Panel | AAHSA: American Association of Homes and Services for the Aged |
| NQF: National Quality Forum | NCL: National Consumers League |
| AQA: Formerly known as Ambulatory Care Quality Alliance | AAFP: American Academy of Family Physicians  |
| IOM: Institute of Medicine | ACP: American College of Physicians  |
| NGA: National Governors Association | AMA: American Medical Association |
| FACA: Federal Advisory Committee Act | AMGA: American Medical Group Association  |
| EO: Executive Order | AphA: American Pharmacists Association |
| NCVHS: National Center for Vital and Health Statistics | MGMA: Medical Group Management Association |
| AHIP: America’s Health Insurance Plans | APHA: American Public Health Association |
| BCBSA: Blue Cross Blue Shield Association | NACCHO: National Association of County and City Health Officials |
| NCQA: National Committee for Quality Assurance | NASMD: National Association of State Medicaid Directors |
| ANA: American Nurses Association | WBGH: Washington Business Group on Health |
| Alliance: Alliance for Quality Nursing Home Care | NACDS: National Association of Chain Drug Stores |

## Acronyms (cont’d)

| AdvaMed: Advanced Medical Technology Association | ACLA: American Clinical Laboratory Association |
| --- | --- |
| NCPA: National Community Pharmacists Association | ASTRO: American Society for Therapeutic Radiology and Oncology |
| eHI: eHealth Initiative | ACR: American College of Radiology |
| HIMSS: Health Information Management Systems Society | NBCH: National Business Coalition on Health |
| NAHIT: National Alliance for Health Information Technology | HLC: Health Leadership Council |
| AHIMA: American Health Information Management Association | BR: Business Roundtable |
| AMIA: American Medical Informatics Association | NBGH: National Business Group on Health |
| NAHDO: National Association of Health Data Organizations | NACHRI: National Association of Children’s Hospitals and Related Institution |
| NAHC: National Association for Home Care and Hospice | CAPS: Consumers Advancing Patient Safety  |
| PhRMA: Pharmaceutical Research and Manufacturers of America | NHIN: Nationwide Health Information Network |
| BIO: Biotechnology Industry Organization | NACHC: National Association of Community Health Centers |
| AAMI: Association for the Advancement of Medical Instrumentation | NCSL: National Council of State Legislatures |
| AAMC: American Association of Medical Colleges | AARP: American Association of Retired Persons |
| AHA: American Hospital Association | FAH: Federation of American Hospitals |
| HIE: Health Information Exchange | MDMA: Medical Device Manufacturers Association |

## Appendix: Case Studies

- Appendix: Case Studies

## Introduction

- This section includes case studies of comparable public-private partnership models.  We have rated each model as high, medium, or low comparability, and have included important differences and relevant characteristics that informed our proposed business model for the AHIC Successor.  The rating is indicative of our appreciation for the desired purpose and structure of the AHIC Successor.
- “Comparability” refers to the similarity of the models with our proposed model, in terms of structure, process, membership, federal government role, and transparency.  The relevant characteristics are examples of the criteria we considered when developing our proposed model for the AHIC Successor.
- Additionally, we have included a matrix of the case studies and the relevant characteristics so that you can easily compare the characteristics across the various models.
- The case studies represent only a subset of our research on existing public-private partnership models.  The full list of models researched is provided after the case studies.

## Case Study: American National Standards Institute (ANSI)

| Purpose | Coordinates development and use of voluntary consensus standards in the U.S.; represents the needs and views of U.S. stakeholders in forums on global standards  |  |
| --- | --- | --- |
| Comparability | HIGH | Important differences: Limited transparency; participation in international forums  |
| Relevance |  |  |
| Structure | 40-member Board of Directors; Executive, Financing and Nominating Committees
Workgroups include Standards Panels, Policy Committees, Member Forums  |  |
| Membership | Government agencies, associations, companies (including vendors), academic institutions, individuals |  |
| Financing | Member fees that vary by size and type of member/organization |  |
| Federal Government Role | MOU from National Institute of Standards and Technology/U.S. Department of Commerce 
Important in coordinating/transitioning federal agency activity around voluntary consensus standards |  |
| Value Proposition  | Access to information and business intelligence that is not available elsewhere 
Opportunity to influence decisions that directly affect members’ businesses  |  |
| Consumer/Advocate Participation  | “Consumer Interest Forum” to facilitate/ensure consumer interests are represented
Members from consumer organizations, industry councils, consumer product certification organizations (e.g., UL, Intertek), and government |  |

- MOU: Memorandum of Understanding
- UL: Underwriters Laboratories, Inc.  ** **

## Case Study: Internet Corporation for Assigned Names and Numbers (ICANN)

| Purpose | Responsible for global coordination of the Internet's system of unique identifiers
Works to develop policy that preserves operational stability of the Internet |  |
| --- | --- | --- |
| Comparability | HIGH | Important differences: Internationally based |
| Relevance |  |  |
| Structure | 21 person board of directors with 15 voting “directors” who may not have any governmental affiliation and 6 non-voting “liaisons,” including one director appointed by the Governmental Advisory Committee *
Board committees (e.g., Audit, Compensation, Executive, Meetings) and Advisory committees (e.g., governmental, security and stability, technical liaison) and supporting organizations)
President, Ombudsman, and staff |  |
| Decision-making Process | By-laws provide specific mechanisms for soliciting, receiving, and considering governmental inputs, received through the Governmental Advisory Committee  |  |
| Federal Government Role | MOU issued by U.S. Department of Commerce |  |
| Accountability | Established mechanism for reconsideration/independent review of ICANN actions through IRP
Ombudsman handles complaint resolution regarding unfair/inappropriate treatment by ICANN |  |
| Transparency | Public meetings held throughout the year
Website is used as the primary vehicle to release information (e.g., meeting times/ minutes, docket of pending policy issues, information on policy reconsideration process)
Manager of Public Participation manages the release of information |  |
| Value Proposition | Opportunity to shape/influence policy |  |

- *According to ICANN by-laws, the board shall “in the aggregate display diversity in geography, culture, skills, experience, and perspective” and no two members can be from the same country
- IRP: Institutional Review Panel

## Case Study: Regional Health Information Organizations (Community HIEs) 

| Purpose | Improve quality and efficiency of health care delivery by promoting/enabling the exchange of health information across communities/the health care continuum |  |
| --- | --- | --- |
| Comparability | HIGH | Important differences: Mission/priorities vary because driven by interests and needs at local level; ranges of transparency differ across HIEs; often provide clear operational infrastructure service  |
| Relevance |  |  |
| Structure | Diverse array of governance structures, often include multiple committees/workgroups
Many public-private partnerships where state government plays differing roles (e.g., funder, policy development, convener, technical support)
Steering/governing committees and workgroups often define short and long term goals, typically include broad representation and expertise from across the health care system |  |
| Membership | Varies by HIE; typically includes consortium of institutional providers, health plans, employers, physicians; may have consumer representatives |  |
| Financing | Government and private funding streams include grants, membership fees, and in-kind donations; most HIEs struggling to identify a long-term sustainable business model |  |
| Transparency  | Varies but degree of transparency often influences success of HIE |  |
| Value Proposition | Differs by stakeholders; includes access to information to reduce costs, improve quality |  |
| Consumer/Advocate Participation | Often limited; may have consumer representative on governing board/committee or solicit consumer input through focus groups, meetings, workgroups |  |

- HIE: Health Information Exchange

## Case Study: Critical Infrastructure Partnership Advisory Council (CIPAC)

| Purpose | To facilitate effective coordination between federal infrastructure protection programs and the infrastructure protection activities of the private sector and of state, local, territorial and tribal governments  |  |
| --- | --- | --- |
| Comparability | MEDUIM | Important differences: Very limited transparency (exempt from FACA/Public Law 92-463); legislative mandate; entirely federally funded; operations focus |
| Relevance |  |  |
| Mandate | Homeland Security Act of 2002, established charge, authority, roles, and responsibilities |  |
| Structure | Sector Coordinating Council (SCC): self-organized, self-led, broad sector representation
Government agencies may suggest the inclusion of various sector parts but each SCC identifies the sector's “boundaries”  
Government Coordinating Council (GCC) serve as governmental counterpart to SCCs
Secretariat, Joint Sector Committees, and a Joint Sector Council
Informal Working Groups established as needed for fact-finding, issue development, or other preliminary non-deliberative activities |  |
| Membership | Critical infrastructure and key resource owner/operator institutions and their designated trade or equivalent organizations comprise SCC
Representatives from federal, state, local and tribal governmental entities form the GCC |  |
| Financing | DHS provides 2 FTEs to support activities and provides funds for administrative and operating expenses and per diems for government officials |  |
| Federal Government Role | Provides recommendations to DHS, the Sector-Specific Agency (SSA) for each industry, and other federal agencies  |  |

- FACA: Federal Advisory Committee Act
- DHS: Department of Homeland Security
- IRP: Institutional Review Panel

## Case Study: Financial Accounting Standards Board (FASB) and Government Accounting Standards Board (GASB)

| Purpose | Designated organizations for establishing standards of financial accounting and reporting; standards govern preparation of financial reports
FASB establishes standards for the private sector 
GASB establishes standards for U.S. state and local governments  |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Separate bodies govern rules for private and government sectors; FASB board serves full-time |
| Relevance |  |  |
| Mandate | Officially recognized by SEC Policy Statement and AIPCA Rules of Professional Conduct |  |
| Membership | Each has a 7-member board
FASB members serve full-time
GASB chair serves full-time, other members employed on one-third-time basis  |  |
| Decision-making Process | Each organization is committed to “due process”
Extensive board and staff analysis and review |  |
| Transparency | Modeled on Federal Administrative Procedures Act, although more stringent; 
Meetings open to public observation and participation; input sought from many sources; technical decisions made in public
Members of the public can suggest topics for technical agenda and submit comments at virtually every stage of decision-making process |  |

- SEC: Securities and Exchange Commission
- AICPA: American Institute of Certified Public Accountants

## Case Study: Medicare Payment Advisory Commission (MedPAC)

| Purpose | To advise the U.S. Congress on issues affecting the Medicare program
To analyze relevant issues affecting Medicare such as access to and quality of care |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Federal Commissioner appointments; legislative mandate; entirely federally funded and staffed |
| Relevance |  |  |
| Structure | 17 Commissioners with diverse expertise in finance and delivery of health care services
Supported by Executive Director and staff of analysts |  |
| Membership | Commissioners are appointed by the Comptroller General* to three year part-time terms 
Appointments are staggered with 5-6 terms expiring each year
Executive director and staff analysts (federal employees) |  |
| Federal Government Role | Makes recommendations to Congress through reports
Advises through comments on reports and proposed regulations issued by HHS Secretary, congressional testimony, and briefings for congressional staff  |  |
| Transparency | Meets publicly to discuss policy issues and formulate its recommendations to Congress
Meetings include public comment periods
Two reports, issued in March and June of each year |  |
| Value Proposition | Recognition and prestige
Opportunity to influence policy making |  |

- HHS: Health and Human Services
- *The comptroller General is the Director of the Government Accountability Office (GAO)

## Case Study: National Action Plan on Breast Cancer (NAPBC)

| Purpose | To better coordinate national response to breast cancer through communication, cooperation, and collaboration
To coordinate the efforts of government and non-government efforts |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Mixed degree of transparency to public; time-limited effort  |
| Relevance |  |  |
| Mandate | President called for conference to establish National Action plan
Conference brought varied stakeholders together to develop comprehensive plan |  |
| Structure | 2 Co-chairs, one government, one non-government head 23 member-appointed Steering Committee (SC) responsible for oversight of NAPBC activities
Non-voting NAPBC Coordinator oversees day-to-day operational issues
Executive Committee (2 co-chairs and Coordinator) provides policy oversight & monitors progress
Working groups in priority areas and ad hoc groups
Liaison groups coordinate efforts with other breast cancer organizations |  |
| Decision-making Process | Consensus based decisions, or if needed, negotiation process with majority vote |  |
| Accountability | Evaluation ad hoc group developed to evaluate the NAPBC |  |
| Transparency | Meeting schedule and meeting summaries are posted online after approval from committee
SC meetings are not open, although visitors may attend as observers if they notify NAPBC ahead of time; visitor requests can be denied and may be asked to leave. |  |
| Consumer/Advocate Participation | Must have consumer representative on the board |  |

## Case Study: National Committee on Vital and Health Statistics (NCVHS) 

| Purpose | Serves as an advisory body to HHS on health data, statistics, and national health information policy |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Membership nominated by industry but selected by government; Federally funded and supported by government staff  |
| Relevance |  |  |
| Mandate | Established by Congress in 1949
In 1996, the charter was revised to meet expanded responsibilities under HIPAA |  |
| Structure | 18-member committee 
16 appointed by HHS Secretary for term of four years each 
2 additional members are selected by Congressional leadership 
Standing and ad hoc subcommittees and working groups address specific issues |  |
| Membership   | Ad hoc selection committee reviews letters of nomination and curriculum vitae 
Slate of the most highly qualified people reviewed by HHS Data Council 
Committee recommendations made to the Secretary for appointment
During selection, HHS gives close attention to equitable geographic distribution and to minority and female representation |  |
| Transparency  | All meetings open to the public with opportunity for public comment, pursuant to FACA  |  |
| Value Proposition  | Committee members can influence national policy and have access to high-level government officials  |  |

- HHS: Health and Human Services
- HIPAA: Health Insurance Portability and Accountability Act of 1996
- FACA: Federal Advisory Committee Act

## Case Study: National Quality Forum (NQF) 

| Purpose | Improve healthcare through endorsement of consensus-based national standards for measurement and public reporting of performance data |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Large membership base and dues-driven model; transparency limited for non-members |
| Relevance |  |  |
| Structure | 300 members governed by a 23 person Board of Directors (BoD), with all members assigned to one of four member councils; assistance from NQF staff
Steering/Review Committees (SC/RC), Technical Advisory Panels (TAPs), and Strategic Advisory Council (SAC) established depending upon specific issue |  |
| Membership | Large, diverse, and representative membership governed by a member board that includes Board-approved application process for new members |  |
| Decision-making Process | Formal, consensus-driven decision making process for endorsing voluntary consensus standards, that allows member organizations to take part in national dialogue
Decision approval process: 1) by project’s SC/RC and TAP, as applicable; 2) Member Councils and general public; and 3) BoD |  |
| Financing | Primarily through member dues and grants from government and private foundations |  |
| Government Role | Government represented on board and in NQF membership 
CMS, AHRQ, CDC, NIH, VA, DoD, and OPM |  |
| Transparency  | High for members but not guaranteed for non-members
Public input solicited as part of formal, defined consensus development process
Findings released to public in form of consensus reports |  |

- CMS: Centers for Medicare and Medicaid Services
- AHRQ: Agency for Healthcare Research and Quality
- CDC: Centers for Disease Control and Prevention

- VA: Department of Veterans Affairs
- DoD: Department of Defense
- OPM: Office of Personnel Management

## Case Study: Remediation Technologies Development Forum (RTDF)

| Purpose | To develop and improve the environmental technologies needed to address the cleanup of hazardous waste
Designed to conduct research, development, and evaluation efforts focused on industry issues |  |
| --- | --- | --- |
| Comparability | MEDIUM | Important differences: Lack of formal board/committee/oversight structure and formal decision-making process; limited transparency; operations focus  |
| Relevance |  |  |
| Structure | Self-managed action teams bring members together to work on high priority problems
Action areas are determined by members of the Action Teams
New teams may form to focus on issues not being addressed in current Action Teams |  |
| Membership | Industry, federal and state agencies, and academia 
Members voluntarily share knowledge, experience, equipment, facilities, and proprietary technology (when necessary) to achieve common goals |  |
| Financing | EPA provides some funding for RTDF
Other agencies (DoD, DOE) provide funding, lab and field support
Members provide in kind support and engage in jointly supported research efforts |  |
| Federal Government Role | Government (EPA) works with and contributes to the research efforts of Action Teams
EPA and other government agencies suggest priority problems for teams to address
Assist with priority setting, serve as co-team leaders |  |

- EPA: Environmental Protection Agency
- DoD: Department of Defense
- DOE: Department of Energy

- NOTE:  RTDF’s last Action Team was created over five years ago.  RTDF will cease operations once the research activities of the active Action Teams are complete.

## Case Study: Foundation for the National Institutes of Health (NIH) 

| Purpose | Works to advance research and facilitates public-private partnerships of all sizes and configurations from large to small scale programs (e.g., special fellowships, research awards, lectures/conferences) |  |
| --- | --- | --- |
| Comparability | LOW | Important differences: Congressional mandate; does not develop/establish policy |
| Relevance |  |  |
| Structure | 20 person Board of Directors composed of distinguished leaders in biomedical research, philanthropy, and business
Director of NIH and Commissioner of FDA are ex officio non-voting members 
3 advisory boards and committees 
Dedicated staff |  |
| Financing | Private sector donations
Congressional appropriations
NIH in-kind services |  |

- FDA: Food and Drug Administration

## Case Study: Institute of Medicine (IOM)  

| Purpose | Chartered by Congress in 1970 as part of NAS to provide science-based advice on biomedical science, medicine, and health
Designed to obtain authoritative, objective, and scientifically balanced answers to questions of national importance and inform deliberative and decision making process  |  |
| --- | --- | --- |
| Comparability | LOW | Important differences: Meetings are not required to be open to the public; Congressional charter; Government agency funding |
| Relevance |  |  |
| Membership | Committees of volunteer scientists – leading national and international experts – who serve without compensation
Committees are carefully composed to assure requisite expertise and to avoid bias or conflict of interest |  |
| Decision-making Process | Most studies are at request of government agencies and often have a lengthy time from request to publication 
Most committees are consensus committees* |  |
| Financing  | Studies often commissioned by federal agencies and funded through their appropriations |  |
| Transparency  | Committees are not obligated to conduct all work in a public forum
Meeting are closed when a committee is discussing the content, findings, or recommendations of a report and open when a committee is gathering information (i.e., hearing from anyone not a committee member or employee, official, or agent of IOM) |  |
| Value Proposition | Prestige and reputation |  |

- NAS: National Academy of Sciences
- *Process is designed to reach consensus on the evidence base and its implications

## Case Study: National Association of Securities Dealers (NASD)

| Purpose | Primary private-sector regulator of U.S. securities industry 
Licenses individuals and admits firms to the industry 
Establishes rules to govern industry behavior with oversight for regulatory compliance; disciplines those who fail to comply |  |
| --- | --- | --- |
| Comparability | LOW | Important differences: Regulatory focus; Membership mandated by law; Government is “hands off”; Financing through member assessments, fines, and annual fees |
| Relevance |  |  |
| Structure | Board of Governors made up of 7 industry representatives, 7 representatives of the public, and 2 categorized as "non-public”
7 board-level committees (e.g., Audit, Finance, Investment, Management, Markets)
6 advisory committees (e.g., Economic, Legal, Operations, Small Firm, Technology) |  |
| Membership | Under federal law, virtually every securities firm doing business with the U.S. public is a member of NASD |  |
| Decision-making Process | New rule proposals are generated from variety of sources:
NASD firms, investors, or other interested parties 
NASD staff initiatives
SEC or other regulatory bodies 
NASD committees and advisory councils
Responses to market developments  |  |

## Case Study: Public Company Accounting Oversight Board (PCAOB)

| Purpose | Private sector, non-profit corporation, created by the Sarbanes-Oxley Act 
Oversees auditors of public companies to protect the interests of investors |  |
| --- | --- | --- |
| Comparability | LOW | Important differences: Legislative mandate; Small board with full-time responsibility; steady funding stream from government and private sector  |
| Relevance |  |  |
| Mandate | Created by the Sarbanes-Oxley Act of 2002
 The establishment, duties, and powers of the PCAOB are all defined under Act |  |
| Structure | 5-member governing board, all required to serve on a full-time basis
At least 2 members must be or have been certified public accountants
Staff members run/oversee the various departments and offices within PCAOB |  |
| Financing | Government funding through SEC
Mandatory fees collected from accounting firms that audit public companies  |  |
| Government Role | SEC appoints members after consulting with Chairman of the Board of Governors of the Federal Reserve System and the Secretary of the Treasury |  |

- SEC: Securities and Exchange Commission
- *The Sarbanes-Oxley Act requires public accounting firms to register with PCAOB and authorizes PCAOB to collect a “registration fee" and an “annual fee" from each registered public accounting firm.

## Case Study: SEMATECH (SEmiconductor MAnufacturing TECHnology) 

| Purpose | Non-profit consortium that performs basic research into semiconductor manufacturing |  |
| --- | --- | --- |
| Comparability | LOW | Important differences: No policy focus; Process and output not transparent or available to non-members  |
| Relevance |  |  |
| Mandate | Began operating in 1988 as a partnership between the U.S. government and 14 U.S.-based semiconductor manufacturers to solve common manufacturing problems and regain competitiveness for the U.S. semiconductor industry that had been surpassed by Japanese industry in the mid-1980's |  |
| Financing | Initially $500 million over 5 years by subsidies from DoD via DARPA 
No longer receives funding from the government |  |
| Value Proposition  | First-to-market solutions – Members get full and detailed, actionable data
Cost avoidance – Members avoid spending the full R&D costs of ultimately unworkable solutions and lower their learning curve for new processes
Inside track – Members receive early evaluation of new materials and technologies |  |

- DoD: Department of Defense
- DARPA: Defense Advanced Research Projects Agency

## Key Characteristics of Relevant Case Studies

|  |  |  |  |  |  |  |  |  |  |  |  |
| --- | --- | --- | --- | --- | --- | --- | --- | --- | --- | --- | --- |
|  | CIPAC |  | S | MS |  | F | FGR |  |  |  |  |
|  | RTFD |  | S | MS |  | F | FGR |  |  |  |  |
|  | ICANN |  | S |  | DP | F | FGR | A |  | VP |  |
|  | ANSI |  | S | MS |  | F | FGR |  |  |  | CAP |
|  | RHIOs |  | S | MS |  | F |  |  | T | VP | CAP |
|  | MedPAC |  | S | MS |  |  | FGR |  | T | VP |  |
|  | NAPBC | M | S |  | DP | F |  | A | T |  | CAP |
|  | NCVHS | M | S | MS |  |  |  |  | T | VP |  |
|  | NQF |  | S | MS | DP | F | FGR |  | T |  | CAP |
|  | IOM |  |  | MS | DP | F |  |  | T | VP |  |
|  | Foundation for NIH |  | S |  |  | F |  |  |  |  |  |
|  | FASB/GASB | M |  | MS | DP |  |  |  | T |  |  |
|  | PCAOB |  | S | MS |  | F | FGR |  |  |  |  |
|  | NASD |  | S | MS | DP | F |  |  |  |  |  |
|  | SEMATECH | M |  |  |  | F |  |  |  | VP |  |

**Case Study**

- M=Mandate; S=Structure; MS=Membership; DP=Decision-making Process; F=Financing; FGR=Federal Government Role; A=Accountability; T=Transparency; V=Value Proposition; CAP=Consumer Advocate/Participant

## Full List of Researched Organizations

## Environmental Sector Organizations

| Name | Acronym | Web site |
| --- | --- | --- |
| Remediation Technologies Development Forum | RTDF | www.rtdf.org/publi/general.htm |
| California Fuel Cell Partnership | --- | www.fuelcellpartnership.org/index.html    |
| Presidio Trust | --- | www.presidio.gov/trust/   |
| National Petroleum Council | NPC | www.npc.org |
| European Partners for the Environment | EPE | www.epe.be   |
| International Network for Environmental Compliance and Enforcement | INECE | www.inece.org |

## Health Sector Organizations

| Name | Acronym | Web site |
| --- | --- | --- |
| Connecting for Health | --- | www.connectingforhealth.org |
| Foundation for the National Institutes of Health | NIH | www.fnih.org  |
| National Committee on Vital and Health Statistics | NCVHS | www.ncvhs.hhs.gov |
| Institute of Medicine  | IOM | www.iom.edu  |
| Canada’s Health Infoway | --- | www.infoway-inforoute.ca  |
| National Quality Forum  | NQF | www.qualityforum.org  |
| Medicare Trustees | --- | www.cms.hhs.gov/REports/TrustFunds/03_AboutTheBoard.asp |
| Medicare Payment Advisory Commission | MedPAC | www.medpac.gov  |
| National Action Plan on Breast Cancer  | NAPBC | www.4woman.gov/napbc/catalog.wci.default.htm  |
| Pharmacy Quality Alliance | PQA | www.pqaalliance.org |
| Regional Health Information Organizations | RHIOs | www.ehealthinitiative.org
www.hitdashboard.com |
| National Five-a-Day Partnership | --- | www.5aday.com/html/events/week.php  |

## Financial Sector Organizations

| Name | Acronym | Web site |
| --- | --- | --- |
| The Public Company Accounting Oversight Board  | PCAOB | www.pcaobus.org  |
| The Financial Accounting Standards Board | FASB | www.fasb.org |
| Government Accounting Standards Board  | GASB | www.gasb.org |
| National Association of Securities Dealers | NASD | www.nasd.com |
| VISA Corporation | --- | www.corporate.visa.com/?src=gg  |
| Government Sponsored Enterprises 
Freddie Mac 
Fannie Mae
Farmer Mac  | GSEs | www.freddiemac.com
www.fanniemae.com
www.farmermac.com |

## Other Sectors/Types of Organizations

| Name | Acronym | Web site |
| --- | --- | --- |
| Semiconductor Manufacturing Technology | SEMATECH | www.sematech.org  |
| Internet Corporation for Assigned Names and Numbers | ICANN | www.icann.org |
| Critical Infrastructure Partnership Advisory Council | CIPAC | www.dhs.gov/xprevprot/committees/editorial_0843.shtm  |
| Underwriters Laboratory | UL | www.ul.com |
| The Open Group | --- | www.opengroup.org |
| Institute of Electrical and Electronics Engineers | IEEE | www.ieee.org |
| Codex Alimentarius Commission | CAC | www.codexalimentarius.net |
| National Conference of State Legislatures | NCSL | www.ncsl.org |
| National Governors Association | NGA | www.nga.org/portal/site/nga  |
| Australian Council of Governments | ACOG | www.coag.gov.au |