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April 22, 2008

The Honorable Michael O. Leavitt
Chairman
American Health Information Community
200 Independence Avenue, S.W.
Washington, D.C. 20201

Dear Mr. Chairman:

At its November 29, 2005, meeting, the American Health Information Community (the Community) recommended the formation of a Workgroup on consumer empowerment. The Community charged the Consumer Empowerment Workgroup (CE Workgroup) with the following:

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.

Broad Charge for the Workgroup: To make recommendations to the Community to gain widespread adoption of personal health records (PHRs) that are easy to use, portable, longitudinal, affordable, and consumer centered.

In response to the Broad Charge, the CE Workgroup heard testimony over the past few months from several presenters that helped define the different types of electronic personal health records and the business cases that will support their widespread adoption. A presentation and paper by Joanne Lynn, “Using Population Segmentation to Provide Better Health Care for All: The Bridges to Health Care Model,” provided a framework for the Workgroup’s discussions on opportunities for health information technology to support special populations. Based on the population segments model provided in the paper, it is believed that persons with disabilities and racial/ethnic minorities have specific needs which, if met, would foster adoption of health IT for the benefit of these populations.

Since last October, the CE Workgroup has focused on identifying the specific and unique needs of special and underserved populations that will facilitate widespread adoption of personal health records within a motivated group. The concept of segmenting consumer populations can lead to more creative and effective strategies for safe, efficient, effective, timely, patient centered, and equitable health care, and thus a better understanding of how to achieve better health for both the individual and for all people. Following are the two population segments that the CE Workgroup addressed with respect to defining distinctive and unique features required in a PHR:

  1. Persons with Disabilities

  2. Racial and Ethnic Communities/Underserved

RECOMMENDATIONS

1. Persons with Disabilities

In October of 2007, the CE Workgroup heard testimony from a panel of presenters that provided a closer look at the use of PHRs among people with disabilities. The presenters represented the diverse needs of this population, including: the Paralyzed Veterans of America; the role of PHRs in facilitating the “disability policy transition” from policies that focus on caretaking to empowerment policies; a business case to promote the ability of PHRs to empower people with disabilities; the role of PHRs to assist in disability determination; and a presentation on the development of a user taxonomy. Regarding the user taxonomy, it was noted that there are differences between the “disabled” and people who are “unwell” regarding privacy needs. Based on the testimony, it was determined that there were several issues that needed to be explored further such as:

  • How PHRs might be used to assist with eligibility determination for disability benefits.

  • How access needs could be met by the technological design of PHRs.

  • How PHRs could facilitate coordinated care among disparate settings.

To further expand on and define the needs of persons with disabilities, the CE Workgroup approved the formation of a Disability Subgroup. The subgroup was convened on December 3, 2007, on a time limited basis (to conclude on or before April 30, 2008). The subgroup held seven meetings and deliberated on recommendations pertinent to the disabled and electronic personal health records. These recommendations were presented to the Consumer Empowerment Workgroup on March 18, 2008, for comment and subsequent presentation to the AHIC.
The recommendations were developed based on the following identified requirements:

  • Providing access consistent with 508/504 requirements

  • Coordinating disability care and emergency needs

  • Addressing authentication challenges

  • Coping with multiple PHRs

  • Facilitating lifelong portability needs of persons with disabilities

  • Recognizing cultural differences among the disability community

  • Addressing HIPAA authorization challenges

  • Facilitating development of medical evidence for disability benefit determination

Recommendation 1.1: HHS should coordinate activity to ensure that PHRs sponsored by the federal government are consistent with statutes and regulations, including accessibility standards, in accordance with Section 503 (29 U.S.C. § 793), 504 (29 U.S.C. §794) and 508 (29 U.S.C. §794d) of the Rehabilitation Act of 1973 (Pub. L. 93-112).

Background: PHRs sponsored by the federal government refers to PHRs developed, used, and supported by the Federal government through contracts or agreements with health care providers, health plans, or health insurance issuers. These products should meet accessibility standards in accordance with Section 503 (29 U.S.C. § 793), 504 (29 U.S.C. §794) and 508 (29 U.S.C. §794d) of the Rehabilitation Act of 1973 (Pub. L. 93-112).

Recommendation 1.2: As HHS develops a use case with attendant interoperability standards specific to the needs of persons with disabilities, this use case should include the following:

  • Provision for coordinated care across multiple health care encounters, providers, and caregivers.

  • Access to and assimilation of information currently existing in paper format.

  • The ability of authorized care and service providers, including the Social Security Administration (SSA) and other public and private entities that have purview over disability compensation, to utilize electronicauthentication and electronic transmittal to obtainrelevant information from the PHR on behalf ofthe authorizing consumer or surrogate, in accordance with the authorizing parties restrictions on what data can be seen or accessed from the PHR.

  • Functional assessmentfor use by persons with disabilities and their providers in subsequentdisability record development.

Background: The Consumer Empowerment Workgroup has previously recommended that the AHIC consider a use case for persons with disability in its prioritization processes. With that in mind, this recommendation specifies some of the elements that this use case should consider when it is developed.

Recommendation 1.3:As PHRs are certified, HHS should coordinate efforts to ensure that relevant electronic health information in these PHRs is interoperable with