Study Finds That Latinos Face Financial, Social and Other Barriers When Seeking Health Care
From 2000 to 2003, a research team at Columbia University's Mailman School of Public Health studied disparities in access to primary and preventive care for Latinos in the United States.
The project entailed database and literature searches, key informant interviews and background papers commissioned from members of the research team. The Washington based research firm Lake Snell Perry & Associates supported research with Latino focus groups, which the Columbia research team used to enrich its analysis.
Findings from the database and literature searches, key informant interviews and background papers included:
- Three kinds of barriers to health care access contribute to poor health outcomes and disparities among Latinos:
- Financial barriers (e.g., one-quarter of the nation's 44 million uninsured are Latino).
- Systemic or structural barriers e.g., difficulties obtaining transportation, lack of interpreter services, and disparities between the percentage of Latinos in the population and the percentage of Latino physicians.
- Sociocultural barriers that occur in the context of the medical encounter between patient and provider.
- A number of public and private sector efforts have been made to address ethnic and racial minority access to primary and preventive health services but in general these have not been specifically focused on Latinos.
- Most efforts to address Latinos' access to primary and preventive health services are void of strategic context and do not address the need to empower the Latino community to advocate collectively on behalf of their own health issues.
Key observations garnered from the focus groups with Latinos include:
- The basic reason Latinos do not get preventive health care services is the lack of health insurance coverage and the expense of health care.
- Latinos said they were frustrated with many aspects of the health care system in the United States.
- Employers are often an impediment to health care, either because they do not provide affordable health insurance or because workers feel unable to take time off from their jobs to seek care.
The Robert Wood Johnson Foundation (RWJF) supported this project through three grants two to Columbia University's Mailman School of Public Health and one to Lake Snell Perry & Associates totaling $292,334.
According to the U.S. Census, the Latino population of the United States is expected to increase from 31 million (11 percent of the population) to 59 million (18 percent of the population) by 2025.
Maintaining the health of Latinos will have major implications for society, as Latinos are increasingly represented among consumers, business owners and workers, taxpayers, voters, and public officials. However, large sectors of the Latino population have not significantly benefited from advances in health promotion and disease prevention efforts that have improved the health of most Americans.
According to the U.S. Department of Health and Human Services' Initiative to Eliminate Racial and Ethnic Disparities, Latinos have poorer outcomes in diabetes and HIV/AIDS, have more problems with uncontrolled blood pressure, and receive fewer childhood and adult immunizations, compared with the general population. These health challenges, and the fact that many of them are preventable or treatable, highlight the importance of understanding the issues relating to Latino access to primary and preventive services.
RWJF engaged a research team based at Columbia University's Joseph L. Mailman School of Public Health to assist in its effort to elucidate the factors affecting Latinos' access to primary and preventive care.
The first grant (ID# 039902) provided funds for researchers to conduct database and literature searches, along with interviews with 53 key experts and national leaders from the government, nonprofit and private sectors, the research community, and philanthropy and advocacy organizations. Research team members framed and analyzed their findings in seven commissioned background papers.
A grant (ID# 040682), to Lake Snell Perry & Associates, allowed researchers to enrich the findings and analyses through a total of 18 focus groups they conducted in Los Angeles, Fresno, New York, Miami, San Antonio and North Carolina, conducted them in Spanish and English. Fourteen of the focus groups involved consumers; four involved health care providers who serve Latino populations.
A third grant (ID# 043386) funded the preparation and dissemination of a comprehensive technical report and a summary report.
Findings (ID# 039902 and ID# 043386)
Columbia University researchers reported the following findings in two reports to RWJF (see the Bibliography for details).
- Latinos face three kinds of barriers to health care access that result in less screening and preventive care, delayed diagnoses, and insufficient treatment, ultimately leading to poor health outcomes and health disparities. Ranked according to their impact, they are:
- Financial barriers (primary). One-quarter of the nation's 44 million uninsured are Latino, and more than one-third of all Latinos are uninsured. The high level of uninsured Latinos is linked to the lack of employer coverage, with only 44 percent of Latinos having such insurance, compared to 70 percent of whites. Changes in the U.S. economy and increasing health care costs, along with recent legislative initiatives, such as welfare and immigration reform, have worsened Latinos' ability Latinos to access health care, and contributed to an atmosphere of fear, misinformation and confusion about resources and programs for which they are eligible.
- Systemic or structural barriers (secondary). These include:
- Interim barriers. Interim barriers, such as difficulty with child care or transportation, confront Latinos between their decision to visit a provider and their arrival at the provider's door.
- Institutional barriers. These include complicated intake procedures, limited off-hours services, less-experienced staff, and a lack of interpreter services and culturally/linguistically responsive health education materials.
- Health workforce and leadership barriers. Health care systems, structural processes of care, and health policies and procedures are very much shaped by the leadership and the workforce. But Latinos, who comprise 12.5 percent of the total U.S. population, make up only 6 percent of physicians and 3.2 percent of nurses.
- Sociocultural barriers (tertiary). These barriers occur in the context of the medical encounter between patient and provider. They include linguistic and cultural differences, which lead to poor communication, patient dissatisfaction, inadequate health education, and poor patient adherence to screening, diagnostic testing, treatment, and other interventions designed to promote health and prevent disease. In addition, differential treatment of Latinos may affect health care delivery and outcomes. For example, studies have shown that Latinos are less likely than whites to receive certain procedures, including coronary artery bypass graft, angioplasty and kidney transplant.
- A number of public and private sector efforts have been made to address ethnic and racial minority access to primary and preventive health services but relatively few of these efforts have been specifically focused on Latinos.
- Government. The Clinton administration's Initiative to Eliminate Racial and Ethnic Disparities, which is administered through the U.S. Department of Health and Human Services, required all health agencies, bureaus and offices to implement initiatives to address the lack of access to primary and preventive services by racial/ethnic minority populations. While these initiatives continue, the grantee indicates this program has not become a priority of the Bush administration, nor have incentives been developed to facilitate compliance. Only a few states with large or growing Latino populations, such as California and North Carolina, have made Latino-specific efforts.
- Private sector. Within the corporate sector, pharmaceutical companies are making some efforts to address health disparities among ethnic and racial groups, but these are generally on a small scale.
- Philanthropy. The philanthropic community has made some limited efforts to address health access barriers through research, policy analysis and programs.
- Health care providers. Most provider efforts to address access occur in large institutions and nonprofit managed care organizations and generally focus on training providers in linguistic proficiency and cultural competency. However, increasingly limited resources are making it difficult for smaller community health centers, which often act as safety-net providers, to serve their Latino populations. Legislative reforms that decrease eligibility and enrollment in public health insurance programs have a major impact on these centers.
- Academic, research and policy. Efforts among academics and policy-makers have been fragmented, with relatively few Latino-specific research activities underway to identify effective interventions for eliminating barriers to care. There are even fewer efforts to develop best practices. Further, efforts by the academic community to focus on training Latino health providers have been limited.
- Nonprofit. National nonprofit organizations have been a voice in advocacy, outreach, service delivery, and activities to improve services for the uninsured and underserved. Few of these efforts have been well coordinated, however. Other ventures, primarily among Latino organizations, have concentrated on uninsured immigrants or advocacy for culturally responsive care.
- In addition to their failure to focus specifically on Latinos, most efforts to address racial/ethnic disparities have other limitations:
- The interventions are essentially void of a strategic context. Many are narrow, duplicative, fragmented and poorly implemented, and they tend to address only a limited number of the factors that affect the Latino population's access to primary and preventive health services. There are also few, if any, instances of collaboration across the public and private sectors, or the philanthropic community.
- The efforts do not address the trend towards providing more choice in health plans and providers, which has a potentially negative impact on Latinos. Those who have limited resources are likely to make their choices on the basis of cost, which means they will purchase more limited coverage.
- Few efforts address the need to empower the Latino community to advocate collectively on their own behalf. Additional focus should be placed on building the Latino community constituency over the long term to strengthen its influence and voice on health access issues.
Focus Group Findings (ID# 040682)
According to the research team from Lake Snell Perry & Associates, Latino focus group participants were not monolithic in their perspectives on health care, and subtle distinctions existed between subgroups (based on sex, country of origin, location and length of residence in the United States, and ability to speak English). However, certain commonalities existed:
- Participants identified the lack of health insurance coverage and the expense of health care as basic reasons why Latinos do not get preventive health care services.
- Latinos said they were frustrated with many aspects of the United States' health care system. Generally, they found it cold, impersonal and unlike the more personal care some received in their countries of origin. They found that waits were too long, appointments were too short and medical facilities were not open during convenient hours. They objected to being assigned primary care physicians, and having to get referrals to see specialists, and found it hard to forge close relationships with their doctors, unless they were also Latino. Some Latino consumers found the paperwork and red tape involved in both public and private insurance plans onerous and confusing.
- Many participants saw their employers as impediments to health care. Many uninsured Latino consumers said their employers did not offer coverage, or offered it at premiums they could not afford. Additionally, many participants said they were reluctant to take time off from work to use health care services because they could not afford to risk their jobs.
- Many participants do not have access to Spanish-speaking providers. Further, many doctors who treat Latinos were not familiar with cultural aspects that may influence treatment and care. Some consumers also felt that issues affecting Latinos were rarely presented from a Latino point of view.
- Many participants are unfamiliar or uneasy with the concept of preventive care. While many knew about mammograms and similar preventive health services, they did not always understand why these services were important to good health. Additionally, many Latino consumers felt that they only needed to see a doctor when they were ill or injured. Some consumers also expressed a discomfort with preventive care, fearing what the doctor may find during a check-up.
- Focus group participants, including physicians, were not urgently concerned about problems affecting Latino use of health care services. When told that Latinos disproportionately suffer from treatable and preventable diseases, most participants were neither surprised nor upset.
- The barriers identified in this study did not seem to equally affect all locations. For example, a newer Latino community, such as Raleigh, N.C., was more affected by barriers that include fewer Latino providers, less health information translated into Spanish, and fewer interpreters than more settled Latino communities, such as like Los Angeles.
Based on all three grants, researchers made the following policy and program recommendations to reduce or eliminate the access barriers for Latinos:
- Improve the Latino community's:
- knowledge of primary and preventive services.
- rights as health consumers.
- ability to navigate the health care system.
- advocacy efforts to mitigate health access barriers.
Recommended approaches include:
- Support private- and public sector investment in building a community-based nonprofit infrastructure to engage Latino constituencies in health consumer education and empowerment activities. Foundations, in particular, have significant opportunities to leverage programs and policies aimed at improving Latino health status.
- Develop local cross-cultural coalitions to strengthen community-based accountability and to develop incentives for providers to respond to Latino access issues.
- Build bridges across Latino national organizations and advocacy networks to collaborate and advocate for Latino health access issues.
- Promote increased compliance with existing regulatory and federal mandates designed to promote culturally and linguistically responsive services. Advocates should call for greater compliance with regulatory and federal mandates/standards that are already in place, such as Title VI of the 1964 Civil Rights Act, the Limited English Proficiency guidelines, and the culturally and linguistically appropriate services standards.
- Increase the presence of Latinos in the health workforce and policy arena and among advocate leaders. Recommended approaches include:
- Strengthen the base of Latino political leadership on health access issues. For example, Latino health advocacy groups should partner with the Hispanic Congressional Caucus to brief state and national legislative representatives on Latino health access trends.
- Fortify existing health care workforce programs to ensure adequate representation of Latinos.
- Support fellowships for health policy experts to improve the Latino community's capacity to develop and analyze health policies. Leading health policy schools and health-focused foundations are important partners in efforts to build Latino health policy expertise and need to be mobilized to this end.
- Increase the availability and quality of data, research and training focused on Latino access issues in order to improve the planning of primary and preventive services and to inform policy advocacy efforts. Recommended approaches include:
- Support the establishment of a Latino research network to serve as a clearinghouse for research, training and data collection. Ideally, this would be an inter-university research network.
- Promote the inclusion of ethnic identifiers in all relevant research endeavors as well as in all essential databases. The absence of legislation requiring managed care and other provider organizations to collect racial/ethnic data for the patients they serve makes it extremely difficult to identify access trends among ethnic groups. Health research stakeholders could work with the National Committee for Quality Assurance, which manages the Health Plan Employer Data and Information Set (HEDIS), and with other data collection systems, to identify the most appropriate strategies for collecting this data. This could be a priority project of the proposed Latino research network, in cooperation with other agencies.
- Support accreditation and regulatory bodies in their efforts to develop standardized, knowledge-based models of culturally and linguistically responsive programs to prepare and train health professionals.
The Columbia University research team disseminated its findings and recommendations through two key reports. The team sent a technical report entitled Latino Access to Primary and Preventive Health Services Barriers, Need and a Proposed Course of Action, to foundations, federal agencies, state and local health organizations and accrediting bodies.
They distributed a summary report, abstracted from the first report and entitled Latino Access to Primary and Preventive Health Services Barriers, Needs and Policy Implications, to professional associations interested in health care issues, service providers, researchers and academics, policy development and advocacy audiences, media and policy-makers.
The principal investigator also made 10 presentations on the study. Lake Snell Perry & Associates produced a report Barriers to Preventive and Primary Healthcare for Latinos in the United States summarizing its work with the focus groups. See the Bibliography for details.
AFTER THE GRANT
According to Pamela S. Dickson, the RWJF program officer, "The project report has been valuable across a number of RWJF project management teams because of the breadth of topics covered and its comprehensiveness." Specifically, information collected on the uninsured has informed RWJF's Coverage Team; issues related to health care professionals have been relevant to the Foundation's Workforce Team; and prevention issues have informed the Population Health Team.
RWJF used findings from the study to guide the development of a new national program, Hablamos Juntos, created to explore models of increasing access to medical interpretation for limited English-speaking patients, and to develop explanatory signage and print materials within health care institutions.
In addition, the Columbia University research team is responding to requests by a number of medical schools by redesigning its summary report for use by medical students. The researchers are also supporting efforts by the New York-Presbyterian Community Health Plan to create a health care research and policy institute.
GRANT DETAILS & CONTACT INFORMATION
Evaluating Latinos' Access to Primary and Preventive Care
Joseph L. Mailman School of Public Health at Columbia University (New York, NY)
- Evaluating Latinos' Access to Primary and Preventive Care
Amount: $ 86,804
Dates: October 2000 to January 2001
- Dissemination of Report on Latinos' Access to Health Care
Amount: $ 76,630
Dates: November 2001 to February 2003
Marilyn Aguirre-Molina, Ed.D.
Lake Snell Perry & Associates (Washington, DC)
- Focus Group Sessions for Latino Consumers and Providers on Primary and Preventive Care Access Issues
Amount: $ 128,900
Dates: November 2000 to February 2001
Marilyn Aguirre-Molina, Ed.D.
Professor of Population and Family Health
Mailman School of Public Health
New York, N.Y.
J. Emilio Carrillo, M.D., M.P.H.
Medical Director, New York-Presbyterian Healthcare System
Executive Director, New York-Presbyterian Community Health Plan
Assistant Professor of Public Health and Medicine
Weill College of Medicine
Josephy Betancourt, M.D., M.P.H.
Director, Cross-Cultural Education
Senior Scientist, Institute for Health Policy
Massachusetts General Hospital/Partners HealthCare System
Olveen Carrasquillo, M.D., M.P.H.
Assistant Professor of Medicine & Public Health
Director, General Medicine Fellowship Program
College of Physicians and Surgeons
New York, N.Y.
Glenn Flores, M.D., M.P.H.
Associate Professor of Pediatrics
Epidemiology and Health Policy
Director, Community Outcomes
Associate Director, Center for the Advancement of Urban Children, Department of Pediatrics
Medical College of Wisconsin
Alexander R. Green, M.D.
Assistant Professor of Medicine
Associate Director, Internal Medicine Residency Program
Weill Medical College, Cornell University
Associate Director, Primary Care
New York Presbyterian Hospital
New York, N.Y.
Sylvia Wong, M.P.H.
Mailman School of Public Health
New York, N.Y.
Maria Moreno, M.P.H.
Graduate Research Assistant
Mailman School of Public Health
New York, N.Y.
Lake Snell Perry & Associates
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Aguirre-Molina M and Pond AS. Latino Access to Primary and Preventive Health Services Barriers, Need and Policy Implications (Summary Report). New York: Columbia University, 2001.
Aguirre-Molina M, Betancourt J, Carrasquillo O, Carrillo JE, Flores G, Green AR and Wong S. Latino Access to Primary and Preventive Health Services Barriers, Need and a Proposed Course of Action (Technical Report). New York: Columbia University, 2001.
Lake Snell Perry & Associates. Barriers to Preventive and Primary Healthcare for Latinos in the United States. Washington: Lake Snell Perry & Associates, 2001.
Report prepared by: Robert Crum
Reviewed by: Karyn Feiden
Reviewed by: Marian Bass
Program Officer: Pamela S. Dickson