|
Items in cart [1] |
Questions? Call 888-624-8373 |
| Copyright © 2009. National Academy of Sciences. All rights reserved. Terms of Use and Privacy Statement |
Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 34
3
Development and Availability
of the Strategic Plan
T he initial Strategic Plan grew out of a process that began in 1999, when a
National Institutes of Health (NIH) Working Group was established to
examine health disparities research. In 2000, legislation created NIH's
National Center on Minority Health and Health Disparities (NCMHD). The trans-
NIH Working Group on Health Disparities was co-chaired by the acting deputy
director of NIH and the director of the National Institute of Allergy and Infec-
tious Diseases. The Working Group included the directors and representatives of
NIH Institutes and Centers (ICs) and the directors of the Office of AIDS Research,
the Office of Behavioral and Social Sciences Research, the Office of Disease
Prevention, and the Office of Research on Women's Health. The acting NIH
director and the director of the Office of Research on Minority Health also served
as ex officio members (NIH, 2000).
The Working Group recommended that NIH develop a strategic plan dealing
with minority health and health disparities. The group was also charged with
developing that plan, which was to include individual strategic plans from ICs
and Offices. The plans were developed in consultation with professional and
patient advocacy groups, the public, the ICs' respective advisory councils, and
the scientific community.
A draft plan was published in October 2000 for technical and public review.
This early version of the Strategic Plan established goals for research, research
infrastructure, and public information and community outreach that are used in
the 2002 and 2004 Strategic Plans (NIH, 2000).
In 2000, the newly created NCMHD assumed responsibility for the Strategic
Plan. By December 2001, the ICs had submitted completed plans, and in March
34
OCR for page 35
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 35
2002, NCMHD submitted the NIH Strategic Research Plan and Budget to Reduce
and Ultimately Eliminate Health Disparities for 20022004 to the NIH director
for review. During 2002, the ICs and Offices provided comments to NCMHD on
the draft. The Strategic Plan was resubmitted to the NIH director in July 2002. In
March 2003, the Strategic Plan was submitted to Congress, thus becoming offi-
cial and publicly available roughly a year behind the legislation's target date
(Table 3-1).
From October 30, 2003, to January 5, 2004, the 2002 Strategic Plan was
posted for public comment. Several sources suggested that the definition of health
disparities populations be broadened to include additional groups, such as people
TABLE 3-1 Strategic Plan Time Line
Fiscal Year (FY) 2002 Strategic Plan
September 1999 Harold Varmus establishes a working group to examine
health disparities research. The working group recommends
the development of a strategic plan.
January 2000 Ruth Kirschstein reestablishes the Working Group on Health
Disparities. It is co-chaired by Yvonne Maddox and
Anthony Fauci. Members include the directors of the NIH
ICs and Offices.
October 6, 2000 The draft Strategic Plan is published for technical and
public review.
November 22, 2000 The Minority Health and Health Disparities Research and
Education Act of 2000 (P.L. 106-525) creates the NCMHD.
December 2001 The draft 2002 Strategic Plan is completed after submission
and revision of IC plans.
March 11, 2002 The 2002 Strategic Plan is submitted to the NIH Office of
the Director for clearance.
July 2002 The 2002 Strategic Plan is resubmitted to the Director's
Office after comments have been received from the ICs and
Offices.
March 2003 The 2002 Strategic Plan is submitted to Congress.
FY 2004 Strategic Plan
November 2003January 2004 The 2002 Strategic Plan is posted for public comment on the
NCMHD website.
May 2004 NCMHD requests submissions from the ICs and Offices for
the updated Strategic Plan.
October 2004 The draft 2004 Strategic Plan is submitted to the NCMHD
Advisory Council for comments.
SOURCE: NIH, 2000, 2003; Ruffin, 2004.
OCR for page 36
36 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
suffering from orphan diseases, the mentally and physically disabled, prisoners,
specific racial subpopulations, and lesbian, gay, bisexual, and transgender com-
munities. Other suggestions included: expanding the scope of inquiry to include
access to health care and the quality of health care; improving data collection and
data quality; producing an accurate definition of health disparities; developing
additional programs to improve research infrastructure at minority academic in-
stitutions; and developing racially and culturally sensitive outreach and public
communication programs (Table 3-2).
The legislation called for annual reviews and "appropriate revisions" of the
Strategic Plan. The Plan itself stipulates that it "will be updated and reviewed on
a yearly basis." However, as of July 2005, the Strategic Plan for 20042008--
which should have officially updated the previous Strategic Plan--had not yet
been approved by NCMHD or its advisory council, nor had it been submitted to
the director of NIH. Compared with the 2002 Strategic Plan, the draft of the 2004
TABLE 3-2 Public Comment Themes
Theme Illustrative Example
General · Include among health disparities populations: lesbian, gay,
bisexual, and transgender communities; Haitians; individuals
suffering from orphan diseases; underrepresented Asian
subpopulations; the mentally ill; men; prisoners; the
handicapped
Research · Increase the scope of research to include cultural,
psychological, behavioral, social, racial, and gender-based
influences on health
· Study racial/ethnic disparities in access to health care
· Produce accurate, uniform definitions of health disparities and
improve data collection and the quality of data on health
disparities
Research infrastructure · Sponsor programs to mentor, educate, and provide grant
support to minorities who pursue health career opportunities
· Promote partnerships between minority-serving and research-
intensive institutions
· Support and expand community outreach efforts and
community participation
· Broaden partnerships and leverage resources available from
professional associations, health care organizations, academic
institutions, and other community members that serve
minority communities
· Identify and make available successful community-based
intervention strategies
Outreach and public · Ensure that all communications with health disparities
communication populations and their subgroups address their needs and
perspectives
SOURCE: Adapted from NCMHD, 2004.
OCR for page 37
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 37
Strategic Plan included significant changes in the description of research goals
and objectives. The ICs' individual strategic plans had also been updated. No
budget was provided.
The timing and rate of production of the Strategic Plans were disappointing.
There had been just two Strategic Plans in the 5-year period of the program--the
first produced in the 3rd year and the second, as yet incomplete, near the end of
the 5th year.
Finding: NIH has not updated the Strategic Plan as intended by the
legislation and the NIH.
Recommendation 2: The NIH director should assure that the Strategic
Plan is reviewed and revised annually using an established, trans-NIH
process subject to timely review, approval, and dissemination.
THE 2002 AND 2004 STRATEGIC PLANS
As of March 2005, even with the preceding developmental efforts, the Com-
mittee found it difficult to identify the Strategic Plan. Although the 2004 Strate-
gic Plan had not yet been fully approved, it did include significant updates in the
overall goals and objectives as well as updates in the ICs' individual strategic
plans, which had been approved by the respective IC directors. The Committee
felt that it would be more helpful, retrospectively and prospectively, to review
and assess the 2004 Strategic Plan as the most recently available intended Strate-
gic Plan, rather than to limit its review to the original 2002 Strategic Plan.
The 2002 and 2004 Strategic Plans describe the scope of the problem of
health disparities among minorities and other populations, specific objectives for
research and related programs, and the means for advancing those objectives.
They present a broad range of research and related activities that the NIH in-
tended to undertake.
Each Strategic Plan includes two volumes. The Executive Summary, goals,
objectives, and budget of the NIH-wide Strategic Plan, along with other back-
ground material, are included in Volume I, and the strategic plans for each NIH
IC and Office involved in the program comprise Volume II (see Appendix F of
this report for Volume I of the 2004 Strategic Plan).
The first two sections of Volume I describe the development of the Strategic
Plan and summarize the magnitude of the health disparities problem. The text
emphasizes the need for a coordinated, trans-NIH approach in order to achieve
the Strategic Plan's goals. For instance, the Strategic Plan identifies the need for
ICs to integrate nonbiological factors in health disparities research.
The text describes the overall Strategic Plan as "not merely a compilation of
all the activities of the NIH entities, but an aggregation of primary areas of
OCR for page 38
38 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
emphasis and activities conducted across the NIH." What is not described is an
overall vision of health disparities, including a research strategy that addresses a
timed and targeted trajectory, the research agenda's link to other government and
nongovernment efforts, and a sense of NIH's priority.
The Strategic Plan calls attention to the need to enhance the infrastructure
and capacity for health disparities research by supporting the research infrastruc-
ture of minority and minority-serving institutions that may have inadequate re-
sources, increasing the number of minority researchers, and increasing the over-
all number of researchers conducting health disparities research. Additionally,
the Strategic Plan urges the development of new and innovative ways to reach
populations coping with health disparities and their care givers, so that research
findings benefit target populations. Finally, the Strategic Plan calls for the estab-
lishment of interim goals and objectives with quantifiable outcomes, whenever
possible.
Goals and Objectives
The Strategic Plan has three goal areas: (1) research; (2) research capacity;
and (3) community outreach, information dissemination, and public health edu-
cation (Box 3-1). These goal areas are appropriate for the broad challenges
addressed by the Strategic Plan. They reflect NIH's attention to research, as well
as the need to develop and support the extramural infrastructure and capacity to
conduct the research. The goal areas also address the need for efficient transla-
tion of information into better care for patients by informing health profession-
als, patients, and communities. The 2004 Strategic Plan expands upon the 2002
Plan's objectives for each goal, as indicated by italics in Boxes 3-1 to 3-4 and
shading in Table 3-3.
Research
The 2004 Strategic Plan research goal "to advance the understanding of the
development and progression of diseases and disabilities that contribute to health
disparities in racial and ethnic minority populations and other health disparity
populations, including the medically underserved, by increasing and diversifying
biomedical, behavioral, social science, and health services research, as well as
cultural, linguistic, and social epidemiology research conducted and supported by
the NIH" reflects significant changes from the 2002 Strategic Plan goal. The new
goal includes wording addressing health disparity populations other than racial
and ethnic minorities (with specific mention of the medically underserved) and
the diversification of research to include behavioral, social science, social epide-
miology, and health services research. These are important, highly appropriate
additions that recognize the broad, multifactorial, and multidisciplinary issues
that the Strategic Plan should include (Box 3-2).
OCR for page 39
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 39
BOX 3-1
Strategic Plan Goals, Fiscal Years 2002 and 2004
(Italic indicates new or updated text since the Fiscal Year 2002 Strategic Plan)
Research (2002): To advance the understanding of the development and pro-
gression of diseases and disabilities that contribute to minority health and other
health disparities.
Research (2004): To advance the understanding of the development and pro-
gression of diseases and disabilities that contribute to health disparities in racial
and ethnic minority populations and other health disparity populations, including
the medically underserved, by increasing and diversifying biomedical, behavioral,
social science, and health services research, as well as cultural, linguistic, and
social epidemiology research conducted and supported by the NIH.
Research Infrastructure (2002): To increase minority health and health disparity
research training, career development, and institutional capacity.
Research Capacity (2004): To increase minority health and health disparity re-
search training, career development, and institutional research capacity and infra-
structure.
Public Information and Community Outreach (2002): To ensure that the public,
health care professionals, and research communities are informed and educated
concerning the latest advances in minority health and health disparities research.
Community Outreach, Information Dissemination, and Public Health Educa-
tion (2004): To ensure that the public, health care professionals, and research
communities are informed and educated concerning the latest advances in minor-
ity health and health disparities research.
Consideration of Additional Research Objectives
Three additional research areas warrant consideration as enhanced or addi-
tional objectives: (a) social factors; (b) population research; and (c) medical care
disparities.
Social Factors
Social factors contribute to health disparities (see Chapter 2 and Appendix D),
and more attention is needed to understand the multifactorial background of
health disparities. To that end, research should include the behavioral and social
aspects of diseases and disabilities. The 2004 Strategic Plan research objectives
include a new objective that calls for conducting such research in partnership
OCR for page 40
40 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
TABLE 3-3 Objectives for the Fiscal Year 2004 Strategic Plan
Research Objectives Research Capacity Objectives Outreach Objectives
· Advance understanding of · Increase the number of · Provide the latest
the development and participants in clinical research-based
progression of diseases trials from racial and information to health care
and disabilities that con- ethnic minority popula- providers to enhance the
tribute to health disparities tions and other health care provided to
disparity populations individuals within racial
· Develop new or improved
and ethnic minority
approaches for detecting or · Expand opportunities in
populations and other
diagnosing the onset or research training and
health disparity
progression of diseases career development for,
populations
and disabilities that con- and provide research
tribute to health disparities supplements to, research · Facilitate the
investigators from racial incorporation of science-
· Develop new or improved
and ethnic minority popu- based information into the
approaches for preventing
lations and other health curricula of medical and
or delaying the onset or
disparity populations allied health professions
progression of diseases
schools, theological
and disabilities that con- · Increase the number of
education institutions,
tribute to health disparities researchers conducting
public health schools, and
health disparities research
· Develop new or improved into continuing education
approaches for treating · Increase funding support activities of health
diseases and disabilities for the construction and professionals
that contribute to health renovation of research
· Maintain ongoing
disparities facilities across the nation
communication linkages
aimed at enhancing the
· In partnership with other and partnerships with
ability of these institutions
agencies of the Depart- community-based and
to conduct health dispari-
ment of Health and Hu- faith-based organizations,
ties research
man Services, advance health care associations,
understanding of the · Provide increased funding foundations, and academic
multifactorial causes of at institutions across the institutions, and foster
health disparities, includ- country for resources, new dialogue with racial and
ing nonbiological bases of equipment, and shared ethnic minority
disease incidence and equipment programs for populations and other
progression use in health disparities health disparity
research populations, including the
underserved
· Increase the peer review
representation in peer · Develop computer
review of individuals from databases and Internet
racial and ethnic minority resources to disseminate
populations and other current information about
health disparity populations scientific research and
discovered and other
activities regarding heath
disparities
OCR for page 41
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 41
TABLE 3-3 continued
Research Objectives Research Capacity Objectives Outreach Objectives
· Promote the development · Develop targeted public
of inter-institutional health education programs
partnerships between focused on particular
historically research- disease areas in order to
intensive and historically reach those individuals
minority-serving institu- within racial and ethnic
tions that seek to build a minority populations and
research infrastructure other health disparity
populations who
· Improve research data
experience health
collection systems, and
disparities within these
enhance data quality
disease areas
regarding health dispari-
ties, and develop uniform · Facilitate, document, and
data systems that facilitate disseminate practical
strategies for the elimina- strategies responsive to
tion of health disparities the health care needs, and
appropriate to the cultural
· In collaboration with
and linguistic needs, of
schools and programs of
communities throughout
public health, state and
the United States
local health departments,
and academic health · Collaborate with public
departments, support and health and other health-
promote community-based oriented policy centers to
participatory research translate research findings
into policy documents that
can be used by policy
groups and other
stakeholders to explain
new discoveries from a
policy perspective to
decision makers
SOURCE: Adapted from NCMHD, 2004.
with other agencies within Health and Human Services. This new objective will
need to be translated into more attention to interdisciplinary, transdisciplinary,
and transprofessional science that will advance the understanding of health dis-
parities by working across the spectrum of biological, behavioral, and social
determinants. Also, research on the multifactorial nature of health disparities
should be integrated as part of the first objective on "understanding the develop-
ment and progression of diseases and disabilities that contribute to health dispari-
ties" rather than only taking place in partnership with other agencies.
OCR for page 42
42 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
BOX 3-2
Fiscal Year 2004 Strategic Plan Research Objectives
(Italic indicates new text)
Goal: To advance the understanding of the development and progression of dis-
eases and disabilities that contribute to health disparities in racial and ethnic mi-
nority populations and other health disparity populations, including the medically
underserved, by increasing and diversifying biomedical, behavioral, social science,
and health services research, as well as cultural, linguistic, and social epidemi-
ology research conducted and supported by the NIH.
· Advance understanding of the development and progression of diseases and
disabilities that contribute to health disparities
· Develop new or improved approaches for detecting or diagnosing the onset or
progression of diseases and disabilities that contribute to health disparities
· Develop new or improved approaches for preventing or delaying the onset or
progression of diseases and disabilities that contribute to health disparities
· Develop new or improved approaches for treating diseases and disabilities that
contribute to health disparities
· In partnership with other agencies of the Department of Health and Human Ser-
vices, advance the understanding of the multifactorial causes of health dispari-
ties, including nonbiological bases of disease incidence and progression
Population Research
There is a continuing need to identify and understand the presence and extent
of dissimilar health conditions in populations and groups identified as having
worse health situations. Such analyses can serve as bases for recognizing re-
search and interventional needs and opportunities, as well as for assessing effects
of intervention. Moreover, current definitions and designations of minority and
health disparity groups do not identify important subgroups with specific health
disparities, such as those within the Asian American and Pacific Islander popula-
tion. To plan research and to properly identify groups and their health disparities,
population information for subgroups is needed. Consequently, the Strategic Plan
should address this issue.
Disparities in Health Care
Disparities in health care associated with race, ethnicity, and socioeconomic
status are pervasive and well documented (Smedley et al., 2003). A lack of access
to care and poor-quality care contribute to poor health outcomes and an avoidably
worse health status. Research on disparities in the quality of care includes: (a) the
continued compilation of information on the scope and nature of disparate care,
OCR for page 43
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 43
with respect to the affected populations and groups as well as the settings in
which it occurs; (b) contributing factors, including the possible role of bias;
(c) the design and assessment of interventions, including linkages to quality
initiatives; and (d) education and policy issues. Many such projects deal with
medical procedures and care in clinical settings in which there are important
interfaces with issues and problems of interest to, or investigated by, NIH-
supported research. Although federally supported research on disparities in medi-
cal care has largely been seen as within the purview of the Agency for Healthcare
Research and Quality (AHRQ) and not NIH, in the area of minority health and
health disparities such strict separation of research domains may result in lost
opportunities to pursue particular disparity issues. Depending on the opportunity,
these issues could be included as part of the research objectives and actions of ICs
directed at detection, diagnosis, treatment, and prevention of specific diseases
and disabilities, either independently or collaboratively with other agencies such
as AHRQ and the Centers for Disease Control and Prevention. Such research
should be recognized as part of the Strategic Plan's stated objectives.
Finding: The Strategic Plan has placed inadequate emphasis on under-
standing social and behavioral determinants of health and their interac-
tion with biological factors; better understanding of the characteristics
of populations affected by poor health and the characteristics of diseases
and conditions for which disparities exist in those populations; the rela-
tionship between population disparities in health care and differences in
health status; and research opportunities regarding disparities in health
care.
Recommendation 3: The Strategic Plan research objectives should pro-
mote more integration of research on the multifactorial nature of health
disparities, including nonbiological factors; population research to fur-
ther the understanding of the presence, prevalence, trends, and other
elements of health disparity conditions; and when opportunity exists, an
understanding of the causes of disparities in health care.
Research Capacity
The research capacity goal is "to increase minority health and health dis-
parity research training, career development, and institutional research capacity
and infrastructure." Objectives for this goal in the 2002 Strategic Plan ad-
dressed several appropriate aspects of research infrastructure and capacity, in-
cluding: increased representation of racial and ethnic minorities and other health
disparity populations in clinical trials; support for biomedical career develop-
ment of underrepresented minorities; increased minority representation in peer
review; and improvement of physical research capacity to enhance the ability
OCR for page 44
44 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
of institutions to conduct health disparities research. The 2004 Strategic Plan
includes additional objectives for building research capacity. These objectives
call for increasing the number of researchers conducting health disparities re-
search, improving data collection related to health disparities, increasing part-
nerships between research-intensive institutions and minority-serving institu-
tions, and increasing community-based participatory research (Box 3-3). The
Committee found the research capacity objectives to be appropriate and com-
mented on the importance, potential, and early experience with certain
aspects--diversity in the scientific workforce, the participation of minority
subjects in clinical trials, community-based participatory research, the impor-
tance of reliable data, and the need for the assessment of programs--which are
explored in further detail below.
Increasing the participation of underrepresented minorities in the scientific
workforce is an important element of building the country's research capacity
BOX 3-3
Fiscal Year 2004 Strategic Plan Research Capacity Objectives
(Italic indicates new text)
Goal: To increase minority health and health disparity research training, career
development, and institutional research capacity and infrastructure.
· Increase the number of participants in clinical trials from racial and ethnic mi-
nority populations and other health disparity populations
· Expand opportunities in research training and career development for, and
provide research supplements to, research investigators from racial and ethnic
minority populations and other health disparity populations
· Increase the number of researchers conducting health disparities research
· Increase funding support for the construction and renovation of research facil-
ities across the nation aimed at enhancing the ability of these institutions to
conduct health disparities research
· Provide increased funding at institutions across the country for resources,
new equipment, and shared equipment programs for use in health disparities
research
· Increase the peer review representation in peer review of individuals from ra-
cial and ethnic minority populations and other health disparity populations
· Promote the development of inter-institutional partnerships between histori-
cally research-intensive and historically minority-serving institutions that seek
to build research infrastructure
· Improve research data collection systems, and enhance data quality regarding
health disparities, and develop uniform data systems that facilitate strategies
for the elimination of health disparities
· In collaboration with schools and programs of public health, state and local
health departments, and academic health departments, support and promote
community-based participatory research
OCR for page 49
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 49
600000
533,000
516,000
500000
470,000
400000
Participants 300000
of
200000
Number
100000 30.1% 23.6% 26.6%
0
2001 2002 2003
Minority Total Nonminority
FIGURE 3-5 NIH total recruitment in Phase III clinical trials for Fiscal Years 2001
2003. SOURCE: Powe and Yeung, 2005. Updated using ORWH, 2005.
agement and Budget (OMB) Standards. The number of minority enrollees is
determined by using data from two forms. The "old" form has five race catego-
ries following the OMB 1977 Standards, and the "new" form has seven race
categories and Hispanic ethnicity, following the OMB 1997 Standards. All His-
panics are classified as minorities on the old form, but only nonwhite Hispanics
are counted as minorities on the new form. Individuals classified as two or more
races are not counted as minorities, no matter which two races they report. Data
collected on the new form, then, could potentially undercount the total number of
minorities.
The Kellogg Foundation (Kellogg Community Health Scholars Program, 2005)
defines community-based participatory research as a "collaborative approach to
research that equitably involves all partners in the research process and recognizes
the unique strengths that each brings. [Community-based participatory research]
begins with a research topic of importance to the community [and] has the aim of
combining knowledge with action and achieving social change to improve health
outcomes and eliminate health disparities." Proponents of community-based par-
ticipatory research see it as a way to incorporate historical and structural factors,
such as poverty, discrimination, and culture, into the study of health issues in the
community while drawing on partnerships among investigators, respondents, and
other community members and stakeholders (Gebbie et al., 2003).
OCR for page 50
50 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
This approach to community research could bring benefits, including the
equitable participation of community members and researchers, which creates
an environment of trust and knowledge sharing that traditional research struc-
tures lack. Furthermore, the sense of seeking "knowledge for action" as well as
"knowledge for understanding" empowers community members and fosters
their investment in the research agenda by engendering stronger research and
high-quality results (Israel et al., 1998; O'Fallon and Dearry, 2002). Moreover,
this research potentially yields results relevant to the interests, circumstances,
and needs of the involved communities that apply them, results that are more
immediately actionable in local situations for patients and/or practitioners, and
findings that are more credible to practitioners and policy makers elsewhere
because they were generated in partnership with people like themselves (Aungst
et al., 2003).
Conducting community-based participatory research is challenging. Signifi-
cant groundwork (outreach, education, identification of partners, development of
infrastructure) needs to be done before communities are ready to participate in
these projects. Because research funding is typically provided for individual
studies rather than for building community capacity, sustainability is a major
factor in the success of these projects. Concerns about sustainability can under-
mine initial partnership efforts. In this respect, NCMHD support for building the
infrastructure for community-based research is particularly important. In another
challenge, community-based participatory research takes more time than tradi-
tional research--sometimes frustrating both community members and investiga-
tors anticipating results. Also, lack of trust or mutual respect can undermine the
principles of the research, while funding conflicts may weaken relationships. The
research's scientific rigor may be questioned and the research design may com-
plicate data analysis, resulting in further challenges that can negatively affect
investigators' careers. According to some (Holkup et al., 2004; Lantz et al.,
2001), however, community-based participatory research can be productive when
solutions for facilitating the process are implemented.
At NIH, 17 of 26 ICs queried indicated that in general they had supported
community-based participatory research projects (Powe and Yeung, 2005),
though a review of the ICs' strategic plans revealed that only 6 ICs and Offices
had included community-based participatory health disparities research projects
in their strategic plans.
There is an unmet need for valid and reliable data on health disparities
to (a) identify and survey disparities and (b) explore and explain disparities
(Fremont and Lurie, 2004). The inadequacy of current data, discussed in Chapter
2 as a concern for the NIH research program, ranges from basic information, such
as annual race/ethnicity-specific measures of health status, to more detailed items,
such as geocoded individual-level health status and sociodemographic data sets.
In Healthy People 2010, for example, which lists diseases and conditions for
OCR for page 51
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 51
which racial disparities might exist, baseline race/ethnicity-specific measures
were missing for some race and ethnicity groups for many of the disorders on the
list. Moreover, further surveillance data were not available for all race and ethnic
groups (Ver Ploeg and Perrin, 2004).
Lacking appropriately collected and coded data, researchers may be unable
to link individual-level health survey data to structural data that describe the
social, economic, and political environments that might be factors in particular
health outcomes--a linkage that is particularly important in the investigation of
health disparities. Additional problems include a lack of standardization in ethnic
and racial categories, inaccuracy in the reporting of racial statistics, and sample
sizes that are too small to allow statistically meaningful comparisons (Ver Ploeg
and Perrin, 2004).
It is difficult to get information on the effects of the various research
infrastructure and capacity programs supported by NIH. Given the impor-
tance of these programs, information on program outcomes and impacts is needed
for assessments of the programs' effectiveness. Information should be continu-
ously gathered and analyzed for those programs included in the Strategic Plan's
objectives, such as programs directed at minorities to address research training
and career development, and those aimed at increasing the number of researchers
conducting health disparities research. For these programs, it would be particu-
larly useful to know what works, which training environments are most success-
ful, and which factors facilitate or limit career success (Committee on National
Needs for Biomedical and Behavioral Scientists, 2000; George et al., 2001).
Also, the Strategic Plan should include assessments of programs that sup-
port: the construction and renovation of research facilities aimed at enhancing the
ability of institutions to conduct health disparities research; the provision of
equipment and shared equipment programs for use in health disparities research;
the promotion of inter-institutional partnerships between historically research-
intensive and historically minority-serving institutions; and the improvement of
data collection and attempts to develop uniform data systems. Although the Of-
fice on Research in Women's Health regularly compiles and reports data on
minorities enrolled in clinical research studies, analysis and assessment of these
data is needed with respect to the minority health and health disparities program
and the Strategic Plan.
A recent National Academies report on minority training programs at NIH
raised similar concerns regarding the need for information and assessment (Com-
mittee for the Assessment of NIH Minority Research Training Programs, 2005).
That report recommended that a set of clear and measurable training objectives,
specific to minority training, be set forth; that NIH commit to the continued
funding of these programs; and that appropriate guidelines and measures for
evaluating these programs be established.
OCR for page 52
52 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
Findings:
· The Strategic Plan does not provide for assessments of the results
of the research capacity and infrastructure programs included as
objectives. Such information is needed to evaluate the effectiveness
of these programs, identify approaches in need of modification, set
priorities, and make evaluations available for internal and exter-
nal reviews.
· The inclusion of community-based participatory research as an
objective of the Strategic Plan is appropriate. There is a need for
development of metrics, analysis, assessment and evaluation of
community-based participatory research for a better sense of the
issues and settings for which it is most promising.
Recommendation 4: The Strategic Plan should include measurable tar-
gets and time periods for the research capacity objectives. NIH, through
NCMHD's oversight, should develop methods of measuring, analyzing
and monitoring the results of programs that address research capacity,
including workforce, institutional, infrastructure, and community-based
participatory health disparity research objectives.
Community Outreach, Information Dissemination, and
Public Health Education
In the Strategic Plan, the community outreach, information dissemination,
and public health education goal is "to ensure [that] the public, health-care pro-
fessionals, and research communities are informed and educated concerning the
latest advances in minority health and health disparities research." The communi-
cation goal encourages efforts that "extend beyond dissemination of the results of
research to other scientists and include the transmission of all information that
may improve the health of racial and ethnic minorities and other health disparity
populations to the general public, patients, advocacy groups, health-care provid-
ers, media, and policy makers." The Strategic Plan proposes "a comprehensive
and aggressive outreach to those groups whom the research is intended to help
and their health-care providers. These messages must be tailored to the communi-
ties at highest risk for the adverse consequences of the health disparity in ques-
tion. The efforts must also include producing health information that is culturally
applicable, ensuring that it is disseminated to the appropriate communities, and
assessing the effectiveness of these communication efforts."
Several new objectives in the 2004 Strategic Plan call for the dissemination
of practical strategies related to health disparities and collaborations to translate
research findings into policy documents. In addition, the 2002 Strategic Plan's
objective for communication and dialogue was expanded to include several types
of community organizations--community-based and faith-based organizations,
OCR for page 53
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 53
BOX 3-4
Fiscal Year 2004 Strategic Plan Community
Outreach, Information Dissemination, and
Public Health Education Objectives
(Italic indicates new text)
Goal: To ensure that the public, health-care professionals, and research commu-
nities are informed and educated concerning the latest advances in minority health
and health disparities research.
· Provide the latest research-based information to health-care providers to en-
hance the care provided to individuals within racial and ethnic minority popula-
tions and other health disparity populations
· Facilitate the incorporation of science-based information into the curricula of
medical and allied health professions schools, theological education institu-
tions, public health schools, and into the continuing education activities of
health professionals
· Maintain ongoing communication linkages and partnerships with community-
based and faith-based organizations, health-care associations, foundations,
and academic institutions and foster dialogue with racial and ethnic minority
populations and other health disparity populations, including the underserved
· Develop computer databases and Internet resources to disseminate current
information about scientific research and discoveries and other activities re-
garding heath disparities
· Develop targeted public health education programs focused on particular dis-
ease areas in order to reach those individuals within racial and ethnic minority
populations and other health disparity populations who experience health dis-
parities within these disease areas
· Facilitate, document, and disseminate practical strategies responsive to the
health-care needs, and appropriate to the cultural and linguistic needs, of com-
munities throughout the United States
· Collaborate with public health and other health-oriented policy centers to trans-
late research findings into policy documents that can be used by policy groups
and other stakeholders to explain new discoveries from a policy perspective to
decision makers
health care associations, foundations, and academic institutions--in addition to
population groups that experience health disparities. These are relevant and sig-
nificant additions to the Strategic Plan (Box 3-4).
Translating research information with clinical implications and derived best
practices to the direct care of patients poses a serious challenge (Lenfant, 2003;
Sehgal, 2003). The important recognition that disparities in communication may
play a role in health disparities prompts concern for a more organized and con-
certed effort in this area (see Viswanath, Appendix G). Like health disparities,
communication disparities are complex. The Strategic Plan addresses two major
OCR for page 54
54 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
areas: (a) the dissemination of research-derived information to practitioners and
institutions providing care to those affected by disparities in health, including
public hospitals and community health centers, and (b) the provision of informa-
tion to people and communities. For communication with providers of care,
problems include sponsor incentives and commitment, the origin and nature of
the information, the appropriate patient care and educational settings in which the
information should be disseminated, and the lack of organized approaches. For
NIH, approaches should include increased sensitivity to these challenges, the
promotion of effective information systems, the assessment of existing models,
the involvement of audiences in the design and assessment of what is needed and
effective, and the promotion of research on such communication (Viswanath,
Appendix G). As more reliable and effective methods are sought, opportunities to
design, implement, assess, and improve the particularly demanding and impor-
tant problems of translating minority health and health disparities information
will be developed for the benefit of communication programs other than those
focused on minority health and health disparities research.
An even greater challenge is disseminating information to the public. As
Viswanath (Appendix G) points out, there are three problem areas, all varying with
race, ethnicity, culture, and other group characteristics: (a) access to information,
including such factors as the availability of information, differences in media chan-
nels, and the affordability of access (including problems related to the digital di-
vide); (b) the attention to and processing of information; and (c) the ability and
capacity of individuals and groups to use the information as it relates to such factors
as language, health literacy, and culture as well as the environment and the avail-
ability of opportunities. These problems create inequities in communication of
health information which may contribute to health status inequities.
Outreach and communication are so challenging and important that these
issues warrant particular attention as a further organized, concerted trans-NIH
effort within the Strategic Plan--well beyond that described in the sporadic ob-
jective areas of individual IC strategic plans. Such a core effort could be informed
and assisted by communication scholars, as well as by representatives from the
audiences being served.
Finding: The current objectives for outreach and public information
identify target audiences, but attention is needed to issues of inequali-
ties in public communication, including those related to access and use
of, and ability to act on, information. Additional understanding is
needed regarding effective communication with those who provide care
to groups with poor health. Coordination of communication programs
across NIH could help with examination of specific audience needs and
evaluations of programs.
OCR for page 55
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 55
Recommendation 5: The Strategic Plan's communication programs
should be organized as a specific trans-NIH effort with centralized
coordination with particular attention to the strategic planning, de-
sign, prioritization, implementation, and evaluation of efforts across
NIH. The initiative should: be informed by advisory expertise; develop
a surveillance system to identify information needs and availability,
sources, behaviors, and use patterns; and promote attention to the
issue of inequalities in health communication.
THE STRATEGIC PLANS OF THE ICS
The Strategic Plan's goals and objectives cannot be achieved unless they are
translated into objectives and actions by the ICs. Twenty-five ICs, the Office of
AIDS Research, and the Office of Behavioral and Social Sciences Research are
part of the 2002 and 2004 Strategic Plans. The ICs and Offices used various
methods to identify objectives and programs for their individual strategic plans
within the overall framework of the Strategic Plan goals and objectives. This
resulted in a variety of objectives, reflected in initiatives that address a broad
range of diseases, disabilities, and strategies.
The Committee reviewed the plans outlined by the ICs in Volume II of the
2002 and 2004 Strategic Plans. In addition, it commissioned a survey of the ICs
to review their experience in addressing and implementing the Strategic Plan.
The survey included achievements, barriers encountered, and recommendations
for improving the process. Patterns of similarity to, and difference from, the
overall Strategic Plan were noted.
Some objectives from the overall Strategic Plan appear prominently in the
ICs' objectives and planned actions. For example, in the research area, the most
frequent IC objectives are those focused on advancing the understanding of the
development and progression of diseases and disabilities that contribute to health
disparities. In the area of research capacity, the ICs have numerous planned
actions, including minority-targeted and untargeted awards, programs for stu-
dents ranging in age from elementary school to professional school, and collabo-
ration with minority-serving institutions. In communication, the numerous
planned actions also vary in content, target audience, and methods for dissemi-
nating information. Outreach messages range from disease and coping informa-
tion to behavior recommendations and treatment options (Powe and Yeung,
2005).
The ICs' plans infrequently mention some Strategic Plan objectives, includ-
ing those addressing data collection systems and community-based research.
Similarly, outreach objectives dealing with the provision of information directed
at professional school curricula, the use of computer databases, and involvement
in policy development were not widely adopted. In addition, the ICs' plans give
little attention to the provision of information to health care providers, despite
OCR for page 56
56 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
widespread awareness of the need for rapid and effective translation of research
findings into the direct care of patients. Even some research objectives consid-
ered relevant to the domains of many ICs are unclearly identified as objectives or
intended activities in their strategic plans--for example, those addressing the
detection, prevention, or understanding of multifactorial causes of disparities in
health. Gaps between the overall objectives of the Strategic Plan and those of the
ICs for which the objectives are relevant predict a lack of significant activity and
achievement in these areas.
It is noted that some ICs have planned activities in epidemiology and col-
laboration with, or involvement in, research on disparities in health care, areas
that are relevant but were not included in the overall objectives of the Strategic
Plan. This report recommends that they be included (see Recommendation 3).
The draft 2004 Strategic Plan included individual strategic plans for each IC,
but there was no evidence that these plans were developed as part of a coordinated
trans-NIH plan. Hence, it is unclear whether the 2004 Strategic Plan's revised
objectives guided the ICs' updated plans. Because it lacks a budget, the draft 2004
Strategic Plan's value as a planning and management tool is diminished.
The Committee was most concerned about the need to coordinate the ICs'
strategic plans as part of a truly concerted trans-NIH plan. The ICs' individual
strategic plans are the ultimate implementation of the NIH Strategic Plan, and so
they should appropriately reflect the Strategic Plan's overall goals and objectives.
This requires a central, coordinated assessment of the ICs' strategic plans, con-
sidering both the relevance to the purview of the ICs and NIH-wide and IC
program priorities. Such a review should be a documented part of updating and
revising the IC strategic plans to ensure they are complete and relevant. In addi-
tion, ongoing review and monitoring of the overall Strategic Plan should include
assessments of whether, and to what extent, the ICs' objectives and activities
have been carried out, as well as any results. Such information, including central
analysis and evaluation by NCMHD, should be part of an effective annual report-
ing system. At the time of review by the Committee, just one approved annual
report (2001) was available.
Finding: There is no evidence that the Strategic Plans of the ICs were
developed as part of a concerted, trans-NIH strategic planning process.
Planned IC activities are not time-based or targeted.
Recommendation 6:
· The development of updated Strategic Plans should include assess-
ments of the appropriateness of the individual strategic plans of
the ICs, including whether they adequately reflect the overall goals
and objectives of the NIH Strategic Plan.
OCR for page 57
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 57
· Objectives should be time-based and targeted with measurable
outcomes.
HEALTH DISPARITIES AS DEFINED BY THE STRATEGIC PLAN
As discussed in Chapter 2, the term "health disparities" may connote inequi-
table or unjust differences in health, but the term also has been increasingly used
over the past several years to describe differences in health without necessarily
implying the presence of injustice. Thus, "health disparities" is used in the enabling
legislation establishing the NCMHD, in NIH definitions, and by the Strategic Plan.
Also, as noted in Chapter 2, complete agreement does not exist on the best or
most valid way to identify disparity groups (Carter-Pokras and Banquet, 2002;
Weitz et al., 2001). The Strategic Plan defines health disparities in terms of the
disproportionate burden of illness and disease experienced by racial and ethnic
groups, resulting from the interaction of biological factors, the environment, and
specific health behaviors. As primary causes of health disparities, it identifies
factors that have been widely discussed--i.e., socioeconomic status, education,
biological factors, access and quality of health care, racial and ethnic discrimina-
tion, and cultural issues.
For reporting purposes, the 2004 Strategic Plan used the methodological
guidelines developed by the NIH Committee on Minority Health and Health
Disparities Research Definitions and Application Methodology, effective Janu-
ary 2004 (see Chapter 4 and Appendix H). When finalized, the budget of the 2004
Strategic Plan will also use these guidelines, which were an important advance in
NIH's use of established criteria to define groups experiencing health disparities
and track related expenditures. Prior to this guidance, NIH had neither uniform
definitions of health disparity groups nor a system for tracking expenditures that
were specifically directed at health disparities. The 1999 IOM report, The Un-
equal Burden of Cancer, recommended that NIH "improve the accuracy of its
assessment of research that is relevant to ethnic minority and medically under-
served groups by replacing the current `percent relevancy' accounting method
with one that identifies studies whose purpose is to address a priori research
questions uniquely affecting ethnic minority and medically underserved groups."
The NIH Committee was convened in response to language in P.L. 106-525
that called for a report recommending a methodology to "determine the extent of
the resources of the National Institutes of Health that are dedicated to minority
health disparities research and other health disparities research." The method-
ological guidelines in the Committee's report established operational definitions
of minority health and health disparities research, provided a methodology for
applying these definitions, contained criteria for identifying minority health and
OCR for page 58
58 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH
health disparity groups and diseases, and served as the foundation for identifying,
coding, tracking, and reporting NIH activities and resources.
In accordance with the methodological guidelines, the 2004 Strategic Plan
defined health disparity populations as comprising those minority groups delin-
eated within Section 1707(g) of the Public Health Service Act, in addition to low
socioeconomic status populations and rural populations.2
In addition to racial and ethnic minorities, low socioeconomic status groups,
and rural populations, other groups may warrant such a designation--including,
for example, the uninsured, the urban underserved, certain immigrant groups, or
those for whom language is a barrier. It is thus expected, as described by the
enabling legislation, that NCMHD, in consultation with AHRQ, will designate
additional groups. As such, the development of more specific criteria, presum-
ably by a process established by NCMHD, will be needed.
As processes are developed, it should be recognized that identifying multiple
disparity groups may cause efforts to reduce and eliminate disparities to become
fragmented, duplicative, or even zero sum (i.e., one disparity group competing
with another for scarce resources). It has been argued (see Adler, Appendix D)
that the strategy of identifying multiple disparity populations may ultimately be
less fruitful than a strategy focused on identifying and intervening in disparity
processes. For example, low socioeconomic status is not a homogeneous dispar-
ity group or population. Rather, low socioeconomic status is a description of the
end result of a social stratification process in which some individuals end up
with less access to opportunities, such as quality schooling, adequate income, or
safe jobs.
In addition to continued attention to the definition of health disparities, there
is a need for a registry or clearinghouse of health disparity diseases and condi-
tions, including regularly updated information on the prevalence of diseases and
conditions and the populations affected. Such a registry would help with evalua-
tion of the appropriateness and adequacy of the targets and activities of the
overall Strategic Plan and those of specific ICs, and provide guidance for plan-
ning, priority setting, and policy decisions for the NIH and others. This registry
would also provide key information to those involved or interested in health
disparities research, which could track prevalence and trends across multiple
indicators, health outcomes, and population subgroups. Among other functions,
the registry would also help to prioritize research and interventions aimed at
eliminating disparities. In addition, a registry would facilitate collaboration and
allow the needs of subpopulations to be identified.
2Section 1707(g) defines minority groups as American Indians (including Alaska Natives, Eski-
mos, and Aleuts), Asian Americans, Native Hawaiians and other Pacific Islanders, Blacks, and
Hispanics, where Hispanic means individuals whose origin is Mexican, Puerto Rican, Cuban, Central
or South American, or any other Spanish-speaking country.
OCR for page 59
DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 59
Findings:
· Beyond the basic definitions of health disparities indicated by Con-
gress and used by NIH, there are no further criteria for deciding
what constitutes a health disparity group. Understanding the health
impacts of social stratification (e.g., in the education system or the
labor market) presents an additional approach to health disparities
research.
· There is need for a resource that provides updated listings of: dis-
eases and conditions for which differences exist; affected popula-
tions; prevalence data; and other information that would provide a
knowledge base on the scope and impact of disparity conditions.
This resource would help in planning health disparity studies, set-
ting priorities, and assessing research activities.
Recommendation 7: NCMHD should consider the designation of addi-
tional health disparity groups based on an informed process and devel-
oped criteria. It should promote development of, and access to, a regis-
try of diseases and conditions for which disparities exist with regard to
race, ethnicity, socioeconomic status, geographic locale, and other desig-
nated health disparity populations.
Representative terms from entire chapter:
disparities research
