**Consumer Empowerment**

**Background and Options Briefing**

**Policy Issues and Barriers**

**Office of the National Coordinator for Health Information Technology\
**

**February 21, 2006**

The following information has been provided to you by the Office of the
National Coordinator and is a synthesis of data collected from
collaboration with the co-chairs, expert members of the community, and
other workgroup members. This information should be carefully reviewed
and factored into the decision-making process at the February 21, 2006
Consumer Empowerment workgroup meeting. The meeting should focus on
deciding upon recommendations that must be made to the Secretary and the
American Health Information Community at the March 7, 2006 meeting.

**Charges for the Consumer Empowerment Workgroup**

-   **Broad Charge for the Workgroup:** Make recommendations to the
    Community to gain wide spread adoption of a personal health record
    that is easy-to-use, portable, longitudinal, affordable, and
    consumer-centered.

-   **Specific Charge for the Workgroup:** Make recommendations to the
    Community so that within one year, a pre-populated,
    consumer-directed and secure electronic registration summary is
    available to targeted populations. Make additional recommendations
    to the Community so that within one year, a widely available
    pre-populated medication history linked to the registration summary
    is deployed.

**Background Information**

The first requirement stated in the AHIC Charter is: "Protection of
health information through appropriate privacy and security practices."
The specific and broad charges for this breakthrough raise numerous
policy questions for which there are no answers available today. In
addition, there are several policy issues and barriers identified in the
first work group meeting that warrant further consideration. These
include:

1.  Lack of interoperability. How can we ensure interoperability between
    PHRs and EHRs? Do PHRs need to be certified to ensure they meet
    privacy and security, functionality and interoperability
    requirements?

2.  Need for proxies. Can caregivers or family members access a patients
    record's as authorized?

3.  How do we protect personal health information in PHRs?

4.  Inaccurate information could lead to medical decisions that result
    in bad health outcomes. Is this a significant liability issue and if
    so, how should it be addressed?

5.  Lack of consumer awareness. How can we educate and engage consumers
    and their providers about the benefits of PHRs?

6.  Lack of a unique patient identifier. How do we reliably match
    patients to their health records? (please refer to paper on this
    subject)

Many of these questions can only be answered in the context of the
specific scope of the breakthrough initiative.

A successful policy framework should reflect the deliberate
consideration of diverse stakeholders, and consultation with leading
technologists. As this is a new area of both technology implementation
and public policy, it is essential to develop initial policies and
practices and refine them as experience and new questions accrue. The
work group process should result in uniform and well-supported policy
recommendations. This will guide the work in the public and private
sector as the breakthrough project is implemented.

The workgroup should undertake a process to identify and address these
and related policy challenges. The process should be based on:

-   Well-defined mission or charge

-   Policy analysis in the context of the specific scope of the
    breakthrough

-   Strategic input from public interest leadership

-   Equal representation of key interest groups, including consumers,
    patients, providers and payers

-   Accountability to affected stakeholders

-   Transparent and open process

-   Builds upon existing standards and policy work

-   Minimizes barriers to entry for health IT solutions

-   Minimizes impact on economic performance

-   Supports long-term evolution and innovation.