**National Health Data Steward**

As healthcare stakeholders grapple with the issues surrounding
performance measurement \-- leadership, oversight, and guidance is vital
to the appropriate and effective use of health data. The Institute of
Medicine's recent report, *Performance Measurement: Accelerating
Improvement*, envisioned a National Quality Coordination Board charged
with supporting the development of a national system for performance
measurement and reporting.[^1] From the beginning of our work, the AQA
has also recognized the need for a standard set of rules for the
measurement of healthcare quality. Within the scope of AQA activities,
we are leading improvement of performance measurement through consensus
and practical demonstration. Our efforts do not compete with the highly
developed vision of the IOM, but are instead an incremental effort
toward the larger shared goal. Whereas the IOM vision is a proposed
construct, the AQA's work is meant to directly and functionally advance
quality through performance measurement.

The AQA Data Sharing and Aggregation Workgroup recommends that a
public/private entity have the primary responsibility of setting uniform
operating rules and standards for the sharing and aggregation of quality
and efficiency data used in both the public and private sectors, for the
purposes of performance measurement and reporting.[^2] Such rules and
standards are essential for enabling stakeholders to continuously
improve quality and efficiency across the country.

Recognizing the wide range and large number of activities that are
currently being undertaken in this and related areas, including HHS
activities relating to the American Health Information Community
(AHIC),[^3] the workgroup proposes that the public/private entity be
considered as an integral component of a broad quality strategy to
advance health data exchange and use.

This document sets forth: (1) a proposed mission; (2) proposed precepts;
(3) a proposed scope of work; and (4) proposed next steps.

**[[Proposed Mission and Objectives]{.underline}]{.smallcaps}**

***Mission***

> The public/private entity will set uniform operating rules and
> standards for sharing and aggregating public and private sector data
> on quality and efficiency; offer guidance on implementation of such
> national operating rules and standards; and provide a framework for
> collecting, aggregating and analyzing data, to afford means of more
> effective oversight of health care data analyses and reporting in the
> United States.

***Initial Strategies and Objectives to Achieve Mission***

The nation unfortunately lacks a uniform and coordinated strategy for
aggregating physician or group level[^4] performance data, which would
enable us to effectively pinpoint gaps in quality and efficiency across
the country. Currently, many disparate organizations are trying to solve
this problem. However, the proliferation of multiple regional efforts to
aggregate and report data on quality and efficiency, while
well-intentioned, is creating significant burdens for physicians as they
are faced with multiple, uncoordinated demands for data on performance
with little input into the process; doing little to help the consumer;
and wasting limited resources that can be used more effectively if
combined in a uniform effort. These individual initiatives also do not
comprehensively assess provider performance since the data collected are
often insufficient to reliably measure quality and efficiency
performance.

Given the significant and urgent need to address data aggregation
issues, the initial objective is to set policies, rules and standards
for the sharing and aggregation of public and private sector physician
or group level data on quality and efficiency. To help meet this
objective, AQA has launched a pilot to explore approaches that measure
individual physician, group, and system performance; aggregate data from
multiple sources; and generate reports to both consumers and physicians.
Phase One of the Pilot will be conducted in 6 geographically diverse
communities where there are currently active coalitions. Criteria for
the selection of these initial coalitions included:

1.  • Strong physician leadership engaged in creating the coalition

    • Multiple plan participation

    • Multiple employer participation

    • Experience in measuring and aggregating physician or group level
    data

    • Experience providing feedback/reports to physicians

    • Presence of a public website for consumers to access relevant
    information

    • Demonstrated capacity and interest to accept additional tasks
    framed by AQA

    • Willingness to work with a viable health information network if
    available

    • Capability/infrastructure to begin data collection by May 1, 2006

The 6 sites chosen for the pilot include:

• California Cooperative Healthcare Reporting Initiative

• Indiana Health Information Exchange

• Massachusetts Health Quality Partners

• Minnesota Community Measurement

• Phoenix Regional Healthcare Value Measurement Initiative

• Wisconsin Collaborative for Healthcare Quality

Core team members from each of the six community coalitions will meet
with a volunteer Technical Advisory Group and relevant
contractor/consultants to finalize task prioritization; to assign
initial tasks to coalitions; and to provide feedback on the quantitative
analysis plan.

The pilot will provide useful information for identifying effective data
sharing and aggregation rules and standards. Once this goal is reached,
the workgroup anticipates that there will be a need to link this
activity with similar activities in other health care settings -- such
as hospital, home-care, long-term care and hospice settings -- to
prevent the development of silos within the health care system. Outreach
to the Hospital Quality Alliance and other key stakeholders would be
initiated to discuss ways to collaborate, the possible expansion of this
entity's role beyond physician or group level data aggregation in the
future and other related issues.

**[[Proposed Precepts]{.underline}]{.smallcaps}**

In performing activities, the entity shall follow certain precepts:

-   To be objective in its decision making.

-   To weigh carefully the views of its constituents in developing
    concepts and operating rules and standards.

-   To bring about needed changes in ways that minimizes disruption to
    current aggregation efforts.

-   To review the effects of past decisions and interpret, amend or
    replace operating rules, standards and processes in a timely fashion
    when such action is indicated.

-   To follow an open, orderly process for setting policies, operating
    rules and standards that precludes placing any particular interest
    above the interests of the many stakeholders who rely on health care
    information.

**[[Proposed Scope of Work]{.underline}]{.smallcaps}**

As previously noted, a wide range of activities need to be undertaken to
advance health data exchange and use, including the development of
measures and setting data transmission/IT technical standards. While all
of these activities are important, the entity's responsibilities would
primarily focus on specific issues relating to data collection,
aggregation, analysis, and sharing.[^5]

The scope of work shall include setting policies, rules and standards
for:

-   **Data aggregation** -- Should address various data aggregation
    issues including required characteristics of aggregators (e.g., they
    should be trusted and respected entities), transparency of
    aggregation processes, control and ownership rights of the data,
    potential liability within data aggregation processes, and issues
    that arise when competing aggregation efforts are in a single market
    area; should ensure that the experience of existing aggregation
    efforts are leveraged.

-   **Data collection (includes identification of data sources)** --
    Should set policies, rules and standards for collecting public and
    private sector data from relevant stakeholders, including providers,
    employers, health insurance plans and others based on an agreed-upon
    measurement set; should assess the pros and cons of using data
    derived from administrative data (e.g., claims, pharmacy and lab
    data), medical record review and surveys, and develop policies that
    prioritize data sources based on various dimensions.

-   **Attribution** -- Should address at what specific level(s) data
    should be aggregated (e.g., individual physician level or group
    practice level). When making this determination, should consider
    sample size issues and physician/practice identifier issues.

-   **Methodologies** -- Should set methodological rules and standards
    for aggregating data, including those addressing risk adjustment,
    measure weights and sample size.[^6]

-   **Data analysis** -- Should set data analysis rules and standards,
    including those relating to trending, benchmarking, distribution,
    outlier analysis, correlation analysis and stratified analysis
    (variance between regions and states)

-   **Data validation (audits)** -- Should set policies, rules and
    standards to ensure that the validity of the data submitted is
    independently audited.

-   **Uses of data --** Based on current law, should recommend allowable
    and non-allowable uses of data. Allowable data uses may include
    quality and efficiency improvement, consumer reporting,
    accountability, and pay for performance programs; also should,
    address allowable secondary uses of raw/primary data.

-   **Data access --** Should specify who should have access to data and
    applicable limitations, such as confidentiality and privacy rules;
    should consider policies which allow contributors, including both
    public and private sector entities, to have access to their own data
    as well as information which allows them to compare their data
    against benchmarks.

-   **Data sharing and reporting** -- Should develop guiding principles
    for public reporting and reporting back information to clinicians.
    Screening processes to ensure valid reporting also should be
    addressed.[^7]

**[[Proposed Next Steps]{.underline}]{.smallcaps}**

-   The AQA Data Sharing and Aggregation Workgroup aims to reach
    consensus on the mission, objectives, and scope of work presented in
    this document.

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-   By the end of 2006, the AQA shall:

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-   Recommend what new or existing entities could fulfill the precepts,
    responsibilities, and scope of work as defined in this document.

-   Recommend if this entity should be included in the HIPAA definition
    of a standard-setting organization.[^8]

-   Recommend stakeholder communities, including federal agencies, to
    serve a role and/or participate in the public/private entity. Such
    stakeholder communities should represent a broad range of
    perspectives and have expertise needed to address this scope of
    work.

-   Work with the pilot project's Technical Advisory Committee to
    harmonize current practices with these recommendations.

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-   Work with key organizations to:

    -   Finalize the governing structure;

    -   Seek federal endorsement;

    -   Seek short and long-term funding; and

    -   Develop a strategy to integrate aggregation activities in
        multiple health care settings.

[^1]: Available at
    [[http://www.iom.edu/report.asp?id=31310]{.underline}](http://www.iom.edu/report.asp?id=31310))

[^2]: The entity would operate as a voluntary consensus standards
    setting organization as defined for purposes of section 12(d) of the
    National Technology Transfer and Advancement Act of 1995 (Public Law
    104-113).

[^3]: On June 6, 2005, HHS Secretary announced the formation of AHIC,
    which will provide input and recommendations to HHS on how to make
    health records digital and interoperable, and assure that the
    privacy and security of those records are protected.
    [www.dhhs.gov/healthit.ahic.html](http://www.dhhs.gov/healthit.ahic.html).

[^4]: JCAHO AHA and FHA are leading efforts to help hospitals assess and
    improve quality of care through the Hospital Quality Alliance.

[^5]: The entity may consider delegating some of these functions to
    others with more experience while maintaining overall responsibility
    for such activities.

[^6]: This work should be coordinated with AQA's Performance Measurement
    Workgroup.

[^7]: This work should be coordinated with AQA's Reporting Workgroup.

[^8]: The HIPAA definition of standard setting organization is: "a
    standard setting organization accredited by the American National
    Standards Institute, including the National Council for Prescription
    Drug Programs, that develops standards for information transactions,
    data elements, or any other standard that is necessary to, or will
    facilitate, the implementation of \[the HIPAA Administrative
    Simplification provisions\]." Health Insurance Portability and
    Accountability Act of 1996, Sec. 262 (42 USC §1171 (8))