NIH Examines the Science of Research on Discrimination and Health

"Discrimination is often identified as a contributor to racial and ethnic disparities in health but rarely examined in this context." To address this issue, on February 2-4, the National Institutes of Health (NIH) led by the Applied Research Program (ARP) and the Behavioral Research Program (BRP), both of which are within the Division of Cancer Control and Population Sciences (DCCPS) of the National Cancer Institute (NCI), convened a three-day conference to examine the research and research methods for investigating the role of racial and ethnic discrimination in health.  The Agency for Health Care Research and Quality (AHRQ), the National Institute on Drug Abuse (NIDA), the National Heart, Lung, and Blood Institute (NHLBI), and the NIH Office of Behavioral and Social Sciences Research co-sponsored the meeting.

The meeting was designed to pursue three goals: (1) promote the science and research on racial and ethnic discrimination and its contribution to racial and ethnic disparities in health; (2) identify gaps in the research literature and areas for future research and/or NCI/NIH funding initiatives; and (3) increase awareness of the NIH's interest in funding research in this topic area through the Program Announcement (PA), The Effect of Racial and Ethnic Discrimination/Bias on Health Care Delivery (PA-080-083, PA-08-084, PA-08-085).

NCI's Pebbles Fagan welcomed the meeting's participants on behalf of Vickie Shaver who was adapting the conference's agenda to accommodate speakers and the weather.  Fagan expressed appreciation for those who were able to attend the meeting in person and recognized their commitment to informing how to move the best way forward as NIH seeks to improve the health of the nation.   More than a thousand people attended the meeting via videocast.

Fagan explained that the genesis for the meeting grew out of the above referenced PA, released in 2006, and included collaboration with NHLBI, NIDA, the National Institute of Mental Health (NIMH), the National Institute of Diabetes and Digestive Diseases and Kidney Diseases (NIDDK), and the National Institute on Aging (NIA).  The announcement's purpose was to encourage submission of grants designed to improve the measurement of racial and ethnic discrimination in health care delivery systems, enhance understanding of racial and ethnic health disparities in health care delivery, and reduce the prevalence of racial and ethnic disparities through the development of interventions, said Fagan.  She further explained that for the purpose of the PA, health care delivery is defined as the provision or receipt of a broad range of health related services including, preventive, primary, ambulatory, patient, emergency, specialty, and long-term care.   Additionally, health care delivery systems are defined as insurance plans, hospital, clinics, private systems, private physicians offices, public and community health facilities that provide or finance health care delivery.

She pointed out that Shavers followed up the PA by convening a small workshop, in collaboration with NHBLI, NIMH, NIDDK and NIDA, in 2008.   The workshop's purpose was to stimulate interest, improve methodological approaches, and encourage submission of high-quality research grant applications that examine the role of racial and ethnic discrimination in the receipt of health care and health disparities, including:  (a) examining the current state of and identify gaps in the research related to the role that racial/ethnic discrimination plays in the receipt of health care in the U.S.; (b) generating a research agenda that identifies research questions that are high priority, feasible, and relevant to research on the role of racial and ethnic discrimination in health care delivery; (c) improving the technical and grant-writing skills of applicants and thus increase the likelihood of funding success; and (d) encouraging the development of an interdisciplinary community of scholars interested in and conducting research on this topic.   

The February 2011 meeting was designed to continue and broaden that discussion to include additional stakeholders and included topics such as:  institutional racism, personal prejudice and bias, implicit attitudes and stereotypes and stereotype threat, strengths and limitations of existing instruments and methodologies for measuring the prevalence of or exposure to  racial and ethnic discrimination, the effect of chronic exposure to discrimination over the life course, discrimination and its impact on physical and mental health, and perceived discrimination including the role of cultural incompetence and racial discordance.

Collaboration around Problems that Need an Interdisciplinary and/or Multidisciplinary Approach

BRP director Bill Klein highlighted the collaboration between NCI's behavioral research program and its applied research program.  He indicated that it was a "notable and wonderful example of how pieces of NCI can come together around common problems that need to be addressed in an interdisciplinary and multidisciplinary way."   Putting the meeting into context, Klein explained that within the BRP they tend to think of behavior as somewhere in the middle of a variety of processes.  According to Klein, the behavioral research program thinks about some of the antecedents of behavior - what actually gets you to engage in health behavior, attitudes, risk perception, family systems and relationships.   BRP talks about behavior itself and how to measure it, and how to conceptualize behavior.  What is sedentary behavior or physical activity or good nutrition, asked Klein.  It is very difficult to define those things, he noted.  At the same time, the applied research program has made great strides in the measurement of behavior.   Klein pointed out that NCI is very interested in the outcomes of behavior, how do you get from behavior to experiencing cancer outcomes.  He noted that the NCI has a major initiative that looks at obesity and how obesity can lead to cancer - what are some of the biological mechanisms that get you there.

What is interesting about discrimination, Klein explained is we know that discrimination itself can lead to all types of behavior in a healthcare system and one's household that has to do with relationships between individuals, patients, and their providers.  He further explained, discrimination starts a chain of processes or outcomes that is very important to understand.

But discrimination is not just an antecedent, Klein argued, it is also a behavior itself so it is important to understand how to conceptualize behavior and how to define discrimination.  Much of the research supported at NCI involves outcomes that are easy to define, citing cancer screening and obesity and overweight as examples.   But trying to define discrimination is very difficult.  It comes in many different forms.  It sometimes is very covert and hard to know that it is even there.  Accordingly, it is very important for us to understand how to measure and conceptualize it, Klein stressed.

Klein emphasized that it is important to understand the outcomes of the various processes at the end of the continuum.   When people feel and experience discrimination what does that mean for cardiovascular health, cancer-related health and a whole array of possible health outcomes, said Klein. 

Another continuum BRP spends a great deal of time on is primary prevention to the end-of-life continuum, Klein said.  This includes primary prevention activities such as smoking and poor eating habits; secondary prevention activities such as screening and working with a physician; or tertiary activities such as treatment and diagnosis; all the way to end-of-life decision making.  Discrimination, Klein pointed out can enter in or opt out any of those stages. Discrimination, concluded Klein, is a topic we can talk about with respect to just about everything that NCI examines.   

Why Study Discrimination?

OBSSR's Wendy Nielsen noted that discrimination is an area of research the Office finds incredibly important, compelling, and one that it is happy to partner with the NCI on.  Nielsen introduced Brian Smedley (Joint Center for Political and Economic Studies), the conference's opening speaker, who addressed the topic of "Why Study Discrimination?"

Smedley began by recognizing the "historic" nature of the meeting and that it was actually a continuation of a number of activities at NIH."   He emphasized, however, that just the "fact that NIH is focusing more on the specific mechanism through which race shapes health is very, very important."  He explained that he wanted to build on that by offering a broader framework.   He highlighted the fact that throughout the three-day conference, individuals would be talking about the experience of race at many different levels.  There will be examples of structural racism, the fact that race structures life opportunities, socioeconomic opportunities and health opportunities in many important ways; institutional racism, how policies and practices, wittingly or unwittingly, create and shape different experiences based on race; interpersonal racism, the most common way racism is understood to operate in the U.S.; and internalized racism, race and the way race is structured creates daily assaults on one's self-worth, which have potential implications for health.

The question is why not study the lived experience of race and the many ways that it plays out to shape health, Smedley put forward.  He argued that there is a need for more comprehensive and holistic models of understanding the lived experience of race.  When it comes to your health, argued Smedley, many factors are at play.  Many young people of color are growing up in high poverty neighborhoods, and facing a number of direct and indirect assaults on health; interpersonal racism and discrimination persist; people of color have a harder time getting jobs even compared to white people with criminal justice backgrounds; and young people of color face assaults on their self-worth and experience internalized racism. It is the cumulative effect of these factors that provide the lived experience of race, according to Smedley.   He stressed that these phenomena have implications not just for people of color, but also for white people in the U.S.

Smedley pointed out that race is important because it:  orders society and societal benefits and structures who receives opportunities; predicts inequities in almost every sector of American life, including in education, employment, housing, health care and criminal justice; and it shapes everyday interpersonal encounters.  There is a growing body of literature, much of it supported by NIH, that "bears out the many ways these experiences literally get under the skin."   He recognized the progress that has been made over the last several generations, but emphasized that race continues to determine available opportunities.

He noted that there are myths that need clarifying when it comes to health inequalities. One of those myths he pointed out surrounds the relationship between race and genetics. He noted that there is not a genetic or biological underpinning to race.  Acknowledging sociologist Troy Duster, Smedley noted that "there are some differences we see but the effect of race on disease may be biological in effect, not in origin."  He stressed that "the lived experience of race may affect gene expression," a topic addressed at the conference.   He also cited as an example research on hypertension in the U.S. and internationally which show that populations that originate from Africa in the U.S. when compared with U.S. whites have high levels of hypertension.   Conversely, he pointed out that European-origin population in other countries such as Canada, Italy, Sweden, England, Spain, Finland, and Germany, have hypertension rates equal to U.S. blacks or higher.  This research points to the need to understand the social, political and economic contexts when considering health behaviors and differences in health status, Smedley explained.

Smedley reviewed for participants the factors research has documented as contributors to racial and ethnic disparities in health:  socioeconomic position, residential segregation and environmental living condition, occupational risks and exposures, health risk and health-seeking behaviors, differences in access to health care, and differences in health care quality.   All of these are factors argue for the critical importance of context in understanding health.  To illustrate, he provided a look at the city of Detroit and the associated "negative effects of segregation on health and human development."  When considering the very health behaviors we want to promote, we need to consider whether the context facilitates or discourages those behaviors, he stressed.

Smedley concluded his remarks by observing that "race affects everyone; even white people experience health impacts - positive and negative - because of privilege and larger societal racism."   He urged the conference's participants to "think how to tie together the different strands of how race plays out in America to a more comprehensive understanding of the different mechanism and different ways in which the construct of race shapes health."

A videocast of the conference proceedings can be viewed via Past Events on the NIH's website.

AHRQ -- Health Care Quality Progresses at Slow Rate; Disparities and Gaps in Access to Care Persist

On February 28, the Agency for Healthcare Research and Quality (AHRQ) released the Congressionally-mandated 2010 National Healthcare Quality Report (NHQR) and National Healthcare Disparities Report (NHDR).  According to the reports, improvements in health care quality continue to progress at a rate of 2.3 percent a year.  At the same time, disparities based on race and ethnicity, socioeconomic status and other factors continue to persist at unacceptably high levels.   The reports are designed to show trends by measuring health care quality using credible core measures.   AHRQ's director Carolyn Clancy pointed out the "reports show that we are making very slow progress toward the goal" of providing all Americans access to "high-quality, appropriate and safe health care that helps them achieve the best possible health."   We need to ramp up our overall efforts to improve quality and focus specific attention on areas that need the greatest improvement," said Clancy.  The 2010 reports focus on health care performance in rural and inner-city areas.

Since 2003, AHRQ has reported on progress and opportunities for improving health care quality and reducing health care disparities, a key function of the reports.  It is a difficult undertaking, "as no single national health care database collects a comprehensive set of data elements that can produce national and State estimates for all population subgroups each year."  Instead, the agency notes that the data comes from more than three dozen databases that provide estimates for different population subgroups and data years.

NHQR and NHDR are complementary and are designed to be used together. NHQR focuses on "national trends in quality of health care" and NHDR focuses on "prevailing disparities in health care delivery as it relates to racial factors and socioeconomic factors in priority populations." NHQR's and NHDR's data are based on more than 200 health care measures categorized in the areas of quality:  effectiveness, patient safety, timeliness, patient-centeredness, care coordination, efficiency, health system infrastructure, and access.  

The 2010 reports incorporate a number of recommendations made by the Institute of Medicine (IOM).   For the 2010 reports AHRQ integrated the findings from the 2010 NHQR and 2010 NHDR to produce a single summary document "intended to reinforce the need to consider simultaneously the quality of health care and disparities across populations when assessing [the] health care system."   The integrated report, the National Healthcare Reports Highlights, addresses three questions:

1.        What is the status of health care quality and disparities in the U.S.?

2.        How have health care quality and disparities changed over time?

3.        Where is the need to improve health care quality and reduce disparities greatest?

Four themes from the 2010 NHQR and 2010 NHDR emphasize the need to accelerate progress if the Nation is to achieve higher quality and more equitable health care in the near future.

Health care quality and access are suboptimal, especially for minority and low income groups. Blacks and American Indians and Alaska Natives receive worse care than Whites for about 40 percent of core measures.  Poor people (household income below the Federal poverty level) received worse care than high-income people (household income at least four times the Federal poverty level) for about 80 percent of core measures.

Quality is improving; access and disparities are not improving. To track the progress of health care quality and access, the reports presents annual rates of change, which represent how quickly quality and access to services delivered by the health care system are improving or declining. Across the 22 measures of health care access tracked, about 60 percent did not show improvement and 40 percent were headed in the wrong direction. 

Urgent attention is warranted to ensure improvements in quality and progress on reducing disparities with respect to certain services, geographic areas, and populations.  These include:  cancer screening and management of diabetes, states in the central part of the country, residents of inner-city and rural areas, and disparities in preventive services and access to care.

The summary notes that data is not available for all States for all measures.  Accordingly, policies that improve data collection at the State level would allow benchmarking across a broader array of measures.   The 2010 report presents an expanded analysis of care across the urban-rural continuum. Residents of the inner city and rural areas sometimes receive worse quality of care.  The report indicates that for most measures of health care quality, difference across the urban-rural continuum were small.  Some disparities, however, were discovered.  Disparities related to preventive care were common across urban and rural areas, while disparities related to diabetes were largest for residents of large inner cities and noncore rural areas.   Disparities in access to care across the urban-rural continuum tended to be more common than disparities in quality of care. Progress is uneven with respect to eight national priority areas and all eight areas showed disparities related to race, ethnicity, and socioeconomic status. 

A key IOM recommendation was that AHRQ highlight progress in selected priority areas expected to yield the greatest gains in health care quality.  AHRQ was encouraged by the IOM to go beyond problem identification and to include information that might help users address the quality and disparities it identifies. The eight national priority areas include:

1.        Palliative and End-of-Life Care (improving in quality) -

2.        Patient and Family engagement  (improving in quality)

3.        Population health (lagging)

4.       Safety (lagging)

5.        Access (lagging)

6.       Care coordination (require more data to assess)

7.        Overuse (require more data to assess)

8.       Health system infrastructure (require more data to assess)

With regard to Population Health, the reports point out that it is influenced by many factors, including genetics, lifestyle, health care, and the physical and social environment.  At the same time, the reports focus on health care and counseling about lifestyle modification and do not address biological and social determinants of health that are not amenable to alteration through health care services.  Acute care is needed to treat injuries and illnesses with short courses, and chronic disease management is needed to minimize the effects of persistent health conditions.  But preventive services that avert the onset of disease, foster the adoption of healthy lifestyles, and help patients avoid environmental health risks hold the greatest potential for maximizing population health.

NHQR and NHDR track five measures related to obesity, diet and exercise; four measures related to nicotine and other substance addictions; and four measures related to transportation for children.  The reports find that "across these measures, most showed no improvement."

The 2010 reports address additional areas:  care coordination, efficiency, health systems infrastructure, access.  The appendixes for both reports are online at www.ahrq.gov/qual/qrd10.htm and include:  data sources, measure specifications, detailed methods, and data tables.

Community Disaster Resilience Subject of NAS Report

The National Academies has released a report, Building Community Disaster Resilience through Private-Public Collaboration.  The report is in response to a request from the Department of Homeland Security (DHS) Human Factors Behavioral Sciences Division, which asked the National Research Council to assess the current state of private-public sector collaboration dedicated to strengthening community resilience, to identify gaps in knowledge and practice, and to recommend research that could be targeted for investment

The Committee on Private-Public Sector Collaboration to Enhance Community Disaster Resilience was chaired by William Hooke of the American Meteorological Society and included:   Arrietta Chakos, Urban Resilience Policy, Berkeley, California;  Ann-Margaret Esnard, Florida Atlantic University; John R. Harrald, Virginia Polytechnic Institute and State University: Lynne Kidder, Center for Excellence in Disaster Management and Humanitarian Assistance, Washington, DC; Michael T. Lesnick, Meridian Institute, Washington, DC; Inés Pearce, Pearce Global Partners, Inc., Los Angeles, California; Randolph H. Rowel, Morgan State University;  Kathleen J. Tierney, University of Colorado, Boulder; and Brent H. Woodworth, Los Angeles Emergency Preparedness Foundation. 

The committee developed a conceptual model for private-public collaboration on the premise that:  1) disaster resilience correlates strongly with community resilience; 2) private-public collaboration is based on relationships in which two or more private and public entities coordinate resources toward common objectives; 3) effective collaboration depends on a community-engagement approach; and 4) principles of comprehensive emergency management ideally guide resilience-focused collaboration.  The report also advised that "private-public collaboration is more sustainable if it begins as a bottom-up enterprise at the grassroots level-instigated by a leader or organization in the community-rather than dictated top down from a command-and-control structure."  These partnerships should reflect and accommodate the unique factors of the communities it serves, the report declared.  These factors include jurisdictional challenges, politics, public policy, geography, local priorities, and access to resources.

With regards to a future research agenda, the Committee indicated that since "most resilience-focused collaborative efforts are largely in nascent stages throughout the nation and because social environments and vulnerability to hazards evolve rapidly, a program of research running parallel to the development of collaborative efforts is imperative, and embedding research within collaborative efforts is ideal."

The Committee recommended a set of research initiatives, which DHS and others could invest in "to deepen knowledge on resilience-focused private-public sector collaboration."  Those initiatives could include: 

§  Investigate factors most likely to motivate businesses of all sizes to collaborate with the public sector to build disaster resilience in different types of communities (for example, rural and urban);

§  Focus research on how to motivate and integrate community-based, faith-based, and other non-government organizations-including those not crisis oriented-into resilience-focused collaboration;

§  Focus research on how the emergency-management and homeland security sectors can be moved toward a "culture of collaboration" that engages the full fabric of the community in enhancing resilience;

§  Focus research on ways to build capacity for resilience-focused private-public sector collaboration;

§  Focus on research and demonstration projects that quantify risk and outcome metrics, enhance disaster resilience at the community level, and document best practices;

§  Focus on research and related activities that produce comparable nationwide data on both vulnerability and resilience; and

§  Establish a national repository and clearinghouse, administered by a neutral entity, to archive and disseminate information on community resilience-focused private-public sector collaboration models, operational frameworks, community disaster resilience case studies, evidence-based best practices, and resilience-related data and research findings. Relevant stakeholders in all sectors and at all levels should convene to determine how to structure and fund this entity.

The full report is available at: http://books.nap.edu/catalog.php?record_id=13028&utm. 

OBSSR at NIH Launches Summer Institute on Mobile Health

On February 28, the National Institutes of Health (NIH) Office of Behavioral and Social Sciences Research (OBSSR) announced the creation of the first NIH mobile health (mHealth) Summer Institute.  The week-long workshop is scheduled for the summer of 2011 and is designed to bring together leaders in mobile health technologies, behavioral science researchers, federal health officials and members of the medical community to provide early career investigators with an opportunity to learn about mHealth research.  OBSSR partnered with Qualcomm, a developer of wireless technologies, to cosponsor the course.

The mHealth Summer Institute is recognition by the agency that mobile technologies have the potential to transform medical research and enable health care providers to more rapidly and accurately assess biological processes, behavior, attitudes, and the environment.  These technologies also allow providers to help patients improve their health in real time-enabling them to personalize health care options and monitor progress.  Through the use of mobile applications and technology, mHealth solutions hold the promise of reducing costs and errors, removing geographical and economic disparities and personalizing health care.  These technologies have helped to bring about a convergence of science, medicine, engineering and communications technologies to improve the quality and provision of health care, while striving to reduce costs and inefficiencies.  

The mHealth Summer Institute will provide an overview of the engineering, behavioral science and clinical aspects of wireless research and will facilitate interaction between participants and experts from across the mHealth spectrum.  The Institute will cover the current state of the science in mobile technology and engineering, behavior change theory and clinical applications, and will highlight the intersection of these areas for health-related research.  Interdisciplinary teams of participants will develop potential mHealth research projects.  Interested individuals can register for the Institute at:

<http://obssr.od.nih.gov/training_and_education/mhealth/index.aspx>

RWJF 2011 Call for Proposals on Public Health Law Research

The Robert Wood Johnson Foundation's Public Health Law Research (PHLR) has issued a call for proposals for its program which seeks to build the evidence for and strengthen the use of regulatory, legal, and policy solutions to improve public health.  At the same time, the program seeks to identify and ameliorate laws and legal practices that unintentionally harm health.   The program looks for answers to such questions as:  How does law influence health and behavior?  Which laws have the greatest impact?  Can current laws be made more effective through better enforcement, or do they require amendment?

PHLR has three primary activities:

1. Funding research and evaluation related to public health laws and their impact;
2. Providing technical assistance to and coordination for those engaging in this type of research, analysis, evaluation and/or integration into practice; and
3. Supporting communication, translation and outreach efforts. 

Two categories of funding are available:  1) Short-term studies - awards up $150,000 each for up to 18 months and 2) Complex and comprehensive studies - awards up to $450,000 each and up to 30 months.   As much as $2.85 million is available for the awards.  

Studies funded via PHLR will be at the intersection of law and public health and may draw upon a range of disciplines including medicine, economics, engineering, sociology, psychology, and public policy and administration.   The primary focus of the research, however, should be a law or policy and its influence on public health.   RWJF encourages creativity and innovation in selecting and blending research methods.  Innovative methods include experimental designs and simulations, the use of biological markers as outcome variables, mixed qualitative-quantitative studies, and the application of cutting-edge econometric and time-series models.