**WRITTEN TESTIMONY**

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

**American Health Information Community**

**Consumer Empowerment Workgroup Meeting**

**Submitted by**

**Russell J. Davis, D.P.A., M.A.P.T., President**

**Ruth T. Perot, M.A.T., Executive Director/CEO**

**Summit Health Institute for Research and Education, Inc.**

**440 First Street, NW, Suite 410**

**Washington, DC 20001**

**www.shireinc.org**

**July 27, 2006**

**Introduction**

On behalf of Summit Health Institute for Research and Education, Inc.
(SHIRE), we commend the Consumer Empowerment Workgroup for your service
on behalf of current and potential consumers of health information
technology (HIT). As SHIRE co-founders and principals, we also take this
opportunity to acknowledge with appreciation the significance of your
charge -- to make recommendations to the American Health Information
Community to gain widespread adoption of a personal health record (PHR)
that is easy-to-use, portable, longitudinal, affordable and
consumer-centered.

SHIRE enthusiastically endorses the premise embodied in this workgroup's
focus. The concept of "consumer empowerment" underscores the critical
importance of the consumer's role if the HIT goals of the Office of the
National Coordinator are to be achieved. As important, providing
consumers with PHRs is a means, as suggested by the Institute of
Medicine, to "cross the quality chasm" and build a "new health system
for the 21^st^ century." ^1^

SHIRE's focus since our establishment in 1997 has been to serve as a
policy advocate and trusted resource to public and private entities for
the elimination of racial and ethnic health disparities and the
attainment of optimum health for all, particularly underserved
communities. We have conducted research in several areas, addressing
policies on racial/ethnic data, language/cultural competency and
informed consent, to determine their impact on either closing or
exacerbating health gaps.

Assessing the impact of HIT on communities of color falls squarely
within our mission. Our advocacy is guided by awareness of the potential
of PHRs, electronic medical records (EMRs) and other HIT innovations to
advance health care service quality and efficiency for [all]{.underline}
consumers. We are further aware of cost data that suggest long-term
savings that can be redirected to health promotion and disease
prevention. ^2^

SHIRE is also informed by research that describes the interrelationship
between health disparities and eHealth solutions in both encouraging and
discouraging terms. Gibbons has presented evidence that applications
tailored to the individual and which meet other standards have positive
potential for health improvement. On the other hand, because of the
relative lack of access and the lack of culturally and linguistically
relevant content, "the Internet has been implicated in the causation or
persistence of disparities." ^3^

These observations form a backdrop for the identification of consumers
who could benefit from PHRs and other HIT innovations, but whose needs
appear to have been minimally considered to date. These consumers
comprise individuals experiencing health disparities, who could be left
even further behind as the HIT movement advances. The following
statistics describing cancer-related health disparities are illustrative
of other morbidity/mortality indicators.

-   Among African Americans, the age-adjusted death rate for all cancers
    was over 25 percent higher than for non-Hispanic white Americans.

-   American Indians and Alaska Natives continue to have the poorest
    survival rates from "all cancers combined" than any other racial
    group.

-   The rates of cervical cancer and liver cancer among Vietnamese
    American women and men, is five and ten times higher, respectively,
    than rates for non-Hispanic whites.

-   Latinos have higher risk for stomach cancer than whites; incidence
    rates are 50 to 100 percent higher among Latina than among
    non-Latina populations in the same geographic area. ^4/5^

-   Other groups experiencing disparities include persons with
    low-income, consumers in rural areas and other underserved
    populations, including Medicaid beneficiaries. For example, the
    Appalachian region has a higher mortality rate for all cancers than
    the U.S. rate as a whole. ^6^

Those potentially left behind also include persons and communities that
are on the other side of the digital divide, and hence, similarly could
be excluded from eHealth solutions. For example:

-   Forty-two percent (42%) of white adults have broadband connectivity
    at home compared with 31% of African Americans. Sixty-eight percent
    (68%) of whites and 50% of blacks have a computer at home.

-   In households with annual incomes less than \$30,000, 21% have
    broadband connectivity compared with 68% of households with annual
    incomes greater than \$75,000. ^7/8^

In short, the numbers of consumers potentially excluded from the HIT
revolution because of health

and digital disparities as well as other factors, could be substantial.
They include a substantial

majority of people of color who comprise 23 percent of the population
(approximately 65 million

persons), non-Hispanic white persons who are poor and near-poor (19
million); and seniors

estimated at 35 million, many of whom are unwilling or unable to utilize
HIT technology. With a

U.S. population in 2000 of 281.5 million, those potentially left behind
for reasons cited herein

could approach nearly one-third of all health consumers or nearly 100
million persons. ^9^

**SHIRE Comments on Selected Hearing Issues**

This assessment has informed SHIRE's positions with regard to several
issues raised by the Consumer Empowerment Workgroup for comment.

*What is needed to increase consumer awareness and engagement in
PHRs?*There is an urgent need for targeted, culturally and
linguistically appropriate educational campaigns, mounted by trusted
organizations that are representative of underserved racial, ethnic and
other communities, and which are directed toward consumers in those
communities and the providers who serve them.

*Who should identify the most important elements of a PHR?*SHIRE
strongly recommends that representatives of underserved communities
should be engaged through a consultative process by the Consumer
Empowerment Workgroup to respond to this question.

*How health and HIT literacy needs should be addressed through
PHRs?*PHRs should be used as tools to provide health promotion and
disease prevention/management information (such as easy-to-understand
definitions of medical terms, scheduled reminders to take medications,
etc.) However, to help bridge the digital gap, we need an expanded
definition of what a PHR can be -- to include cell phones and other
technology widely available in underserved communities. Attention should
also be given to creative ways to make the benefits of PHRs and EHRs
available to members of underserved groups even when they do not have
access to the requisite technology (e.g., computers, high-speed Internet
access) through telephones or hard copy PHRs.

*Should the market be left alone for innovation or could vendors compete
around a minimum criteria set for PHRs?* SHIRE urges a strong Federal
role in establishing certification standards for PHR/EHR
interoperability, for vendor criteria and for certification. Further, in
light of well-founded privacy and security concerns with respect to IT
in general, the Federal government must play a stronger role in ensuring
the privacy and security of personal health information.

*If you think certification is necessary for privacy and security,
interoperability or a minimum set of functionality, is the timing
important is there a sense of urgency given the diversity, complexity
and mobility of today's population and the demand for availability of
PHRs at the point of care?*

It is precisely because of the diversity, complexity and mobility of
today's population that *adequate* time should be taken to ensure
inclusion of potentially excluded groups in the PHR planning process. It
is also important to note that adoption rates of HIT among all providers
is low -- a fact that suggests that public education represents a
challenge that cannot and should not be addressed on a "quick-fix"
basis.

**Suggested Principles**

SHIRE suggests to this workgroup that the following principles be given
serious consideration in its deliberations.

1.  The goal of ensuring that most Americans have access to EHRs in 10
    years cannot be reached unless there is a commitment by all
    stakeholders -- government, the HIT industry, foundations, providers
    and consumers -- to achieve universal access to the technology
    required to realize that aim. SHIRE believes further that this
    universal availability will be instrumental in attaining health
    parity, and anything less can only contribute to the perpetuation of
    health inequities.

2.  Community partnerships are essential -- true partnerships where
    representatives from communities of color and other vulnerable
    groups can participate as equal partners -- from the establishment
    of standards and the planning of pilots to full-scale program
    implementation and evaluation.

3.  We believe there is a need to affirm, as a key principle, that
    consumers own personal health data and that privacy/confidentiality
    safeguards are essential. Accordingly, the federal government must
    step up its efforts to ensure privacy and security of personal
    health information.

> **Recommendations**
>
> SHIRE has proposed several recommendations which, we believe, will
> truly advance health information technology in communities of color. A
> key premise embodied in these recommendations is the absolute
> necessity of *inclusion*. Reflecting the truism that "one size does
> not fit all," SHIRE maintains that consumers of color, the providers
> who serve them and other representatives from vulnerable, underserved
> communities must participate in all aspects of public and private HIT
> initiatives -- planning, development, execution and evaluation and
> must be reached through targeted outreach efforts.
>
> Specifically, we urge the Consumer Empowerment Workgroup to work with
> our organization to reach out to the communities whose voices have not
> yet been heard and are not fully reflected among your membership.
> Taking time now to create an inclusive process will help avert failure
> in the future. The promise of health information technology and its
> potential to end disparities in health care access and quality can be
> realized if we proceed as partners now.

**Endnotes**

1.  Institute of Medicine, *Crossing the Quality Chasm: A New Health
    System for the Twenty-first Century.* Washington, DC: National
    Academies Press, 2001).

2.  Hillestad R et alia, Can electronic medical record systems transform
    health care? Potential health benefits, savings, and costs. *Health
    Affairs*, Volume 24, Number 3, pp. 1103-1123.

3.  Gibbons M, A historical overview of health disparities and the
    potential of eHealth solutions. *J Med Internet Res* 2005, Volume 7,
    Issue 5 e50, p.4.

4.  Office of Minority Health and Health Disparities, *Health
    Disparities Affecting Minorities*, Centers for Disease Control and
    Prevention, <http://www.cdc.gov/omhd/OMHD@cdc.gov>

5.  See also Intercultural Cancer Council, iccnetwork.org/cancerfacts.

6.  *Rural Poor/Medically Underserved Americans and Cancer*,
    iccnetwork.org/cancerfacts

7.  Pew Internet and American Life Project.
    <http://www/pewinterent.org/trends/2006>.

8/9. See also US Census Bureau. http://www/census.gov/prod/2005 pubs