Backed by strong private sector initiative and bipartisan leadership from the executive and legislative branches of the federal government, health information technology (HIT) is emerging as an important means of improving the quality and cost-effectiveness of the nation's healthcare system.
Backed by strong private sector initiative and bipartisan leadership from the executive and legislative branches of the federal government, health information technology (HIT) is emerging as an important means of improving the quality and cost-effectiveness of the nation’s healthcare system. Summit Health Institute for Research and Education, Inc. (SHIRE), a policy research, advocacy, and outreach organization with deep community roots, firmly believes that racial and ethnic minorities—which are projected to constitute more than 50% of the nation’s residents by 2050—must not be left behind as the HIT movement gains momentum. An in-depth understanding of HIT’s potential benefits for racial, ethnic, and other underserved populations; barriers to adoption; and the need for targeted interventions for these groups will be essential if HIT is to achieve its potential for optimizing the care provided by the nation’s health system.
Health Disparities Take Center Stage
Since 1985, the issue of racial and ethnic health disparities has edged to the center stage of public policy. Secretary Margaret M. Heckler, who led the Department of Health and Human Services (DHHS) at that time, spurred this movement with her Report of the Secretary’s Task Force on Black and Minority Health. The study gave currency to the concept of “excess deaths” and documented “a continuing disparity in the burden of death and illness experienced by Blacks and other minority Americans as compared with our nation’s population as a whole.”
The Heckler report also helped to set in motion a series of related developments. A nearly immediate outcome was the establishment of federal and state minority health entities, launched by the Office of Minority Health in the DHHS. The Office of Management and Budget published Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity in 1997, highlighting the importance of consistent race/ethnicity data categorization in data collection and reporting, and contributing to increasing awareness of the role of race and ethnicity in healthcare. In 2000, the Healthy People Initiative identified the elimination of health disparities as an overarching national goal to be attained by 2010, endorsed by thousands
of organizations and individuals.
The report issued by the Institute of Medicine (IOM) in 2002—Unequal Treatment/Confronting Racial and Ethnic Disparities in Health Care—represents a landmark in the fight to reduce racial disparities in healthcare. Charged by Congress to examine the role of race and ethnicity in healthcare differences, the IOM’s principal finding reverberated among health stakeholders at every level: The majority of studies… find that racial and ethnic disparities remain even after adjustment for socioeconomic
differences and other healthcare access-related factors.
Published annually as of 2004 by the Agency for Healthcare Research and Quality (AHRQ), the National Healthcare Disparities Report (NHDR) monitors the nation’s progress toward eliminating disparities in healthcare, focusing on 46 core quality and 13 access measures. Each report has signaled progress made with respect to some indicators. Yet, in its latest publication, AHRQ concluded:
Consistent with extensive research and findings in previous NHDRs, the 2006 report finds that disparities related to race, ethnicity, and socioeconomic status still pervade the American healthcare system. Although varying in magnitude by condition and population, disparities are observed in almost all aspects of healthcare.”
In addition to these federal initiatives, hundreds of individual scholars, supported by academia, foundations, and other institutions, have cast light on racial and ethnic health gaps. The IOM committee responsible for Unequal Treatment examined more than 500 studies prior to issuing its report. Abundant research published since the release of the IOM report has reinforced its conclusions. Only recently, in fact, have a few dissenting voices appeared to challenge the assumption that racial and ethnic disparities persist and, in some instances, are widening.7 Notwithstanding these outlying observations, there is substantial agreement in the literature that racial and ethnic health disparities exist and should be eliminated.
IOM gave three justifications for closing minority health gaps. First and foremost: “Racial and ethnic disparities in healthcare exist and, because they are associated with worse outcomes in many cases, are unacceptable.” Second, although IOM
acknowledges the broader socioeconomic and behavioral risks to health, the study committee also concluded that
“More so than the broader socioeconomic and behavioral risks to health… racial and ethnic healthcare disparities are well within our reach to address.” A third conclusion stated in Unequal Treatment addressed the need for better quality of care. The point was made that eliminating racial and ethnic disparities can lead to raising the overall quality of the nation’s health and healthcare. Lifting quality levels is also cited as one of the six overarching goals identified in the IOM’s report, Crossing the
Offering another rationale for action, a team of researchers recently revisited the “excess deaths” finding that was given visibility in the Heckler report. Their review of US Census data from 1991 to 2000 revealed that nearly 900,000 deaths were attributable to excess mortality among African Americans. They contrasted the total number of lives saved by medical advances (approximately 180,000) and concluded that addressing racial disparities (in this instance) would result in a far greater
return on investment.
This overwhelming consensus on racial and ethnic health disparities has led some stakeholders to conclude that it is time for a paradigm shift. In an editorial written for the New England Journal of Medicine, Dr. Nicole Lurie described the challenge:
During the past decade, hundreds of articles have been published documenting the existence of racial and ethnic disparities in health and healthcare—a data deluge that has led many observers to suggest that it is time to stop documenting disparities and turn our efforts to doing (our emphasis) something about them.
Taking Action to Eliminate Health Disparities
In a recent report, SHIRE undertook an analysis of action strategies mounted by organizations to close health gaps between racial and ethnic minorities and the total population. Firmly committed to the attainment of health parity and optimal health for communities of color, SHIRE promotes effective strategies to eliminate health disparities, and also works with stakeholders and
community partners at all levels to improve healthcare access, quality, and outcomes.
SHIRE’s assessment of the activities of 15 organizations resulted in the identification of six broad areas, or “capacity dimensions,” in which strategies to close health gaps were pursued. They were: 1) institutional leverage; 2) policy advocacy; 3) research and programs; 4) partnership/ coalition-building; 5) information dissemination; 6) and community engagement/empowerment. Also presented in the report were illustrative activities undertaken by participating organizations in each of these categories, as well as recommendations, which, if implemented, could result in closing racial and ethnic health gaps.
Health Information Technology: Improving Healthcare for All
At the time SHIRE’s study was conducted, there was limited discussion among survey respondents of health information technology (HIT) as a possible tool to address and close minority health gaps. Subsequently, several developments have contributed to an expanding awareness of HIT’s potential. They include the explosive activity and creativity of the HIT industry; the President’s Executive Order 13335; heightened concern among payers and providers to improve quality and reduce healthcare costs; the impact of Hurricanes Katrina and Rita, and the efforts of advocates for minority and underserved communities.
In 2004, HIT emerged, with White House and Congressional bipartisan leadership, as a key strategy to improve the quality and cost-effectiveness of the nation’s healthcare system. Executive Order 13335 established the Office of the National Coordinator for Health Information Technology (ONC) within the Department of Health and Human Services (HHS). The ONC, propelled by the President’s vision of the widespread adoption of electronic health records (EHRs) by the year 2014, has been the focal
point of a wide range of planning, standard-setting, and collaborative efforts, which to date have attracted broad support among policy makers, the HIT industry, and the healthcare payer and provider communities.
Proponents believe HIT will rein in unnecessary spending and improve healthcare quality, in part by ensuring that providers have access to information to inform the diagnostic process and treatment decisions and avoid duplicative or unnecessary testing and procedures. At the provider level, EHRs help doctors and nurses track patients for compliance with treatment regimes, identify patients with untreated conditions, and reduce medical errors. In the private sector, insurance carriers, hospitals, and other sectors of the health industry are already realizing the return on their investments in HIT. Although states are also looking at how to support dissemination of HIT and facilitate interoperability, with a few notable exceptions, HIT adoption in public sector
programs is lagging.
SHIRE and other observers also envision significant benefits from HIT for consumers. HIT can clearly contribute to the creation of a new health system that places at its center the person seeking and receiving care. Widespread use of EHRs and personal health records (PHRs) can result in enhanced provider/consumer communication that in turn can contribute to improved
outcomes. Informed and empowered consumers are also more likely to exhibit health management skills and comply with treatment regimens. Access to healthcare through HIT can also expand the capacity of healthcare providers to serve “hard-to-reach” populations in isolated rural and urban areas.
Can HIT Help Close Health Gaps?
HIT has great potential to help refashion the nation’s healthcare system in a way that benefits the entire population. But can HIT contribute to close the health and healthcare gaps that persist between people of color and other US residents? Although federal policy makers and the HIT industry have been fully engaged in the process of advancing HIT, many providers and the communities they serve lag far behind with respect to HIT involvement and adoption. HIT adoption rates are low throughout the nation.
However, the dissemination and utilization of HIT technology in poor, minority, and other underserved communities has not kept pace with even these anemic rates. For example, observers of pre-Katrina Louisiana—a state in which 45% of the population
is considered poor or near poor , 23% of residents are on Medicaid, and 21% are uninsured—found the HIT infrastructure in the state to be immature. Only an estimated 5% of physicians in Louisiana are using electronic records, while one of every seven primary care visits is affected by missing medical information, leading to duplication of, or delays in, care and testing, along
with unnecessary costs to the patient and the payer.
To understand the impact of these statistics in human terms, we need only recall the scenes during the Katrina and Rita disasters of irreplaceable medical records and documents floating in five feet of water. Many hurricane survivors who had fled to the far corners of the nation were bereft of all information about their medicines and medical histories. Those providers who had entered records electronically were rare. Those who did so clearly saved lives by sharing information with health professionals and families seeking to aid or find lost relatives.
Louisiana is not alone. According to a 2006 report by the Markle Foundation, HIT adoption rates among primary care physicians in underserved communities, rural and urban, remain low. This is especially true among community, migrant, and homeless health centers— all important “safety-net” providers of primary care to the nation’s medically underserved.
Nationally, according to a federally commissioned study released by the National Association of Community Health Centers, only 8% of community health centers have adopted health information technology compared to 18% of private, office-based primary care physicians. Data regarding HIT adoption among other providers serving minority communities is very limited,19 but anecdotal evidence confirms similar disparate patterns of HIT adoption and use.
We conclude that serious consequences could result from the non-participation of these communities in the HIT movement.
If HIT disparities in adoption and use are not remedied—and health status, treatment, and outcome disparities persist—one can
anticipate that gaps among racial and ethnic groups will worsen. In fact, these gaps could become chasms if, for example, reimbursement policies are linked to EHR requirements. This could result in the departure from the health field of undercapitalized providers in communities of color, who are unable to make the requisite investments
in HIT—thus exacerbating access gaps. Their patients
will not be able to benefit from HIT, and as a result, the
gap between them and non-minority consumers with
HIT access could increase. Existing disparities can be
exacerbated further if HIT applications that meet the cultural, language, and literacy needs of diverse users are not available, and hence, cannot support improved self-management and behavior changes among racial and ethnic minority groups.
Ensuring That No Community Is Left Behind
The challenge is clear. In order for HIT to become a tool that benefits minority and other underserved communities, and contributes both to the elimination of health disparities experienced by these communities and to national HIT adoption goals, stakeholders at every level must reconsider their assumptions and address certain realities.
The Issue of Cost
Although less expensive systems are increasingly available,
the costs of HIT can be daunting. Community
health centers report that government and private sector
assistance will be essential if adoption rates among
these providers, who serve millions of minority and
other uninsured consumers, are to increase. In the 109th
Congress, the US House of Representatives offered a
limited response to this challenge through the inclusion
of grants for providers in underserved communities.20
Consideration is being given to more comprehensive
legislation in the current session.
One Size Does Not Fit All
Evidence of the importance of acknowledging cultural and linguistic differences presented by diverse populations is overwhelming, and has given rise to a wide range of standards,21 curricula, research, and marketing strategies.
Clearly, these differences extend to the acquisition and processing
of health information, as indicated in the July 2006
issue of MD Net Guide: Focus on Multicultural Health
(MDNG).22 It is apparent therefore that HIT applications,
particularly PHRs, must be culturally and linguistically
appropriate. Accordingly, engaging minority communities
in helping to determine these applications’ design, testing, and application options should be seen as an investment that can reap short- and long-term dividends.
Although concerns about HIT privacy may be waning,23
there is still considerable skepticism about the use of
HIT in the population at large. Minority communities,
who historically have been subjected to experimentation
without consent, have particular concerns about trust
and trustworthiness in relation to the healthcare system.
These concerns can be addressed, and resistance can be
overcome. It is important to recognize—as reported
in the referenced article in MD Net Guide: Focus on
Multicultural Health—the differing information source
preferences among diverse populations.
The Digital Divide
Gaps among US residents continue to exist with respect
to Internet and computer access and use. These differences
occur among all age groups and at all educational
and income levels. They are also reflected among racial
and ethnic populations. These statistics are illustrative:
• 71% of non-Hispanic whites use the Internet compared with 60% of non-Hispanic blacks. In addition, 56% of Hispanic Americans go online.24
• 68% of whites and 50% of Blacks have a home computer.25
• In households with annual incomes less than $30,000,
30% have broadband connectivity, compared with 76% of
households with annual incomes greater than $75,000.26
• The poverty rate for African Americans is three times
that of non-Hispanic whites: 24.7% vs. 8.6%.27
• There are also differences between those living in rural
areas and those living in urban areas. According to a 2007 Congressional Research Service report, the ruralurban gap persists (24.4% vs. 40.4%).28 At the same time, recent trends give rise to cautious optimism.
Data indicate that African Americans are expanding
their access to and use of information technology. This
apparent openness could be transferred to HIT acceptance with targeted outreach and educational efforts.
• Although African American households are still less
likely to have an Internet connection than the general
population, the gap has narrowed over the past two
years. According to the Pew Internet & American Life
Project, the number of African American households
with a cable modem, DSL, or satellite Internet connection
has grown from 14% in 2005 to 40% in 2007.
This is twice the growth experienced in total US
households, of which 30% connected to the Internet in
2005 and 47% now have access.
• 73% of African Americans have used the Internet for
school or training, compared to 54% of whites.
• 67% of African American “Netizens” have sought jobs
online, compared to 39% of whites.29
These favorable indicators signal solid prospects for HIT
adoption in communities of color if government agencies
and the private sector seize the opportunity and make the
requisite commitments and investments to close the digital divide and encourage wider use of HIT among minority providers and consumers.
Who Should Make HIT Decisions?
The principal source of guidance for HIT development
at the federal level is the American Health Information
Community (AHIC), which was chartered in 2005 to
make recommendations to the Secretary of HHS. AHIC
has formed seven work groups to address the following
topics: chronic care; confidentiality, privacy, and security;
consumer empowerment; electronic health records; personalized healthcare; population health; and quality.
A review of the composition of AHIC and its workgroups
indicates that there are few representatives of
minority and other underserved communities who are
able to reflect the views and experiences of those groups
in AHIC deliberations. Ensuring inclusiveness
with respect to HIT planning, standard-setting,
research, evaluation, and the awarding
of grants and contracts is essential. The
Healthcare Information and Management
Systems Society (HIMSS) has taken several
steps in this direction, most recently
by co-sponsoring, with SHIRE two
Congressional educational sessions in
March and May 2007 on the HIT/health
Where to Go From Here?
The current administration has made a clear commitment
to help achieve an ambitious goal: access for most
Americans to secure electronic health records by 2014. That
goal is achievable, but only if the inclusion of nearly onethird
of the population is given priority. It is crucial, therefore,
that the federal government play an essential leadership
role in ensuring that communities of color and other underserved populations participate fully in HIT initiatives.
In order to attain that aim, it is also clear that representatives
from underserved communities must be engaged at
all levels of decision making. Public/private partnerships
are also needed through which technical and financial
resources can be directed to providers and consumers to
acquire and maintain the requisite access, technology, and
applications for maximum benefit. The needs of safety
net providers should be addressed on a priority basis. Such
efforts should be accompanied, if not preceded, by outreach
and education efforts, conducted by trusted agencies
that are able to engage minority stakeholders, address their
information needs and concerns, and explain fully and
openly HIT’s benefits and possible risks.
So that such resources can be provided effectively and
efficiently, research will also be needed in several areas.
Funded research should assess the benefits, costs, and
risks of HIT adoption and non-adoption with respect to
racial/ethnic and other underserved communities. It is also
important to conduct impact analyses of proposed policies
(eg, linking higher rates of reimbursement to HIT
adoption) to ensure that they do not disadvantage these
communities. Finally, as “promising” or “best” practices
emerge, resources should be devoted to promoting and
replicating them in order to learn from others’ successes.
Seven years remain before the year 2014 arrives—the
President’s target date for the adoption and use of electronic
health records by most Americans. This nation has
reached goals in the past that required blending human
ingenuity with technical creativity. This challenge therefore
is not an impossible one. There is sufficient time to
ensure the attainment of this goal and the equally important
aim of achieving health parity among all racial and
ethnic groups. The imperative is to join forces now to
make certain that “no community is left behind.”
Ruth Perot is Executive Director/CEO of Summit Health Institute for Research and Education, Inc. SHIRE is dedicated to the promotion of health and wellness for all people and works to eradicate health disparities and aid vulnerable populations in attaining optimal health. Visit SHIRE online at www.shire inc.org to learn more about its mission, goals , and programs.