Missing Race/Ethnicity Data in Veterans Health Administration Based Disparities Research: A Systematic Review
Many studies evaluating racial disparities in health come from the Veterans Health Administration (VHA) and are based on secondary and administrative data. Often race/ethnicity data are missing in these sources. Knowing how investigators treat missing data is critical in evaluating potential biases. The objectives of this systematic review were to quantify: (1) the data sources for VHA racial/ethnic disparity studies; (2) how missing race/ethnicity data were handled; and (3) the extent of missing race/ethnicity data. Two trained reviewers independently abstracted 114 articles. The Patient Treatment File was the most common source of race/ethnicity data (n=49). For just over half of the articles we were unable to determine if there were missing race/ethnicity data (n=58). When missing race/ethnicity data were quantified, the proportion of instances for which the data were missing ranged from 0% to 48%. Missing race/ethnicity data are frequently present in VHA secondary and administrative data sources, but, the proportion of instances for which such data are missing is explicitly discussed or quantified in only about 50% of all articles using these sources.
Available from: Michele Spoont
- "Although these findings indicate that some racial and ethnic differences in mental health care for veterans with PTSD may exist, methodological issues limit conclusions. For example, national studies using administrative databases omitted smaller racial groups, veterans with unknown race, or only included veterans seen in specialty PTSD programs, potentially biasing their ability to detect disparities in care or to generalize their findings (Elhai et al., 2004; Fontana et al., 2007; Greenberg & Rosenheck, 2003; Long, Bamba, Ling, & Shea, 2006; Rosenheck & Fontana, 1994; Rosenheck et al., 1995; Rosenheck & Fontana, 2002). Similarly, studies involving regional samples may reflect local treatment cultures (e.g., Frueh et al., 2004). "
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ABSTRACT: Many veterans with posttraumatic stress disorder (PTSD) either do not seek treatment or participate in treatment only episodically. The authors conducted a retrospective cohort study using Department of Veterans Affairs (VA) administrative data to determine rates of mental health care use and to examine whether the odds of service use varied by race or ethnicity. They examined all veterans with a new diagnosis of PTSD during a one-year period. Analyses used logistic or negative binomial regression with generalized estimating equations to measure associations of race and ethnicity with mental health service use after controlling for demographic, disability, and access factors. After adjustment, veteran race, but not Hispanic ethnicity, was associated with decreases in some pharmacotherapy measures and increases in some counseling measures.
Available from: ncmedicaljournal.com
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ABSTRACT: Using information from electronic health records (EHRs) to examine racial/ethnic health disparities is increasingly common. This study examines the degree of concordance between administratively recorded race/ethnicity and the criterion standard of self-reported race/ethnicity at a tertiary care Veterans Affairs Medical Center (VAMC) in North Carolina.
We compared self-reported race among 204 respondents to a cross-sectional mailed survey of patients with diabetes conducted in 2006-2007 to the race/ethnicity recorded in the EHR. Concordance was defined as the percent agreement between self-reported and administratively-reported race.
The overall response rate to the survey was 68.9% (204 of 296). Of the 204 respondents, 32 (15.7%) reported a different race/ethnicity from the race/ethnicity reported in the EHR. Misclassification resulted from either the patient reporting a race/ethnicity and having the information missing in the EHR (9.3% of respondents) or the EHR having a different race/ethnicity listed than reported by the patient (6.3% of respondents).
This study was conducted at one VAMC.
While we found misclassification of race/ethnicity in the EHR, the level of discordance is smaller than previously reported in the Veterans Health Administration. Despite this, efforts still need to be made to ensure correct information is included in the EHR.
Available from: Christine Brittle
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ABSTRACT: The U.S. Department of Health and Human Services, Office on Women’s Health (OWH), commissioned this literature review to provide an up-to-date review of effective sex- and gender-based systems/models of healthcare. The review investigated seven main research questions:
1. What key sex and gender differences exist in the current healthcare system structure, including reimbursement mechanisms, content of and access to appropriate care, quality of care, and patient safety?
2. What models or approaches have been successful in engaging and retaining people in systems of healthcare, especially the underserved, the “difficult to reach,” or low literacy populations? Are there sex/gender differences in the effectiveness of these approaches?
3. What are the trends in demographics, service delivery, costs, insurance, or other sectors that could be addressed via a systems approach? To what extent are patients reimbursed for care for specific services (i.e., prevention, mental health, etc.)? Are there gender or sex differences in out-of-pocket patient costs?
4. How does a service delivery site successfully integrate a model program into its current infrastructure of delivering care?
5. How effective are sex- and gender-based healthcare practices? What measures have been used to determine the effectiveness of these practices? What barriers exist to translating/adapting these approaches into clinical practice?
6. How effective is a focus on clinical care at improving women’s healthcare? How effective are systemic improvements (i.e. more women in professorships/research positions or emphasis on women’s health in medical school curriculum) at improving women’s healthcare? Are there other factors (e.g. continuity of care) that may be more important to women than to men or to women’s outcomes vs. men’s outcomes?
7. How can programs targeting boys and men be created to recruit and retain them in the healthcare system? Are programs such as patient advocate or patient navigator more needed or more effective for men at getting them into the system and to needed care?
The literature search was conducted in October and November of 2006. Relevant materials were identified via electronic searches of 12 wide-ranging academic databases that catalog thousands of academic journals, individual journal searches, a library catalog search for relevant books, personal contacts with experts in this field, and an Internet search.
In this executive summary, we provide some brief background materials and then briefly highlight our findings in response to each of these seven main research questions. Because of gender’s potential implications for many aspects of healthcare, and the broad scope of OWH’s initial research questions, our review covers a diverse set of topics such as quality improvement, systems level changes, the role of provider behavior, insurance patterns, and many others. In these discussions, we highlight gender-specific findings and research where available. Where gender is not discussed, we did not find any gender-specific analysis.
Two of the primary sources of medical differences between men and women are biology and physiology. The most obvious sex differences in these categories relate to size, hormones, and the reproductive system, but there are many other such differences that can impact overall health. The result is that men and women may experience the same diseases at different rates or with different symptoms, or they may experience different kinds of illness altogether.
In addition to these biologically and physiologically driven differences, the fact of being male or female leads to different socialization, expectations, and lifestyles. Thus, gender roles and related exposures to stress and adversity as well as health-promoting social ties and resources additionally affect and interact with health. These interactions may be even more complex than biological and physiological factors, as the direction of their effect is not always consistent. For example, some factors make women more likely to seek treatment, while others make them less likely to seek treatment.
Research Question 1: Key Sex and Gender Differences
What key sex and gender differences exist in the current healthcare system structure, including reimbursement mechanisms, content of and access to appropriate care, quality of care, and patient safety?
Because women have fewer resources in terms of time, money, and insurance coverage in their own names, they face unique access barriers to the healthcare system compared with men. However, women are more likely to seek preventive care than men, perhaps because they have been socialized to seek care before a health crisis occurs. Additionally, a higher proportion of women than men become more accustomed to seeking routine medical care because of women’s use of reproductive medical services. Gynecologists remain a key access point to the healthcare system for women, especially among women of reproductive age.
Women appear to receive worse quality care than men do. This appears to be especially true for acute conditions. However, women, as more frequent users of preventive care, may actually receive better preventive care than men. The fact that women’s higher rates of healthcare utilization and preventive care do not carry over into better treatment in general is particularly striking and points to the need for new approaches to improve men’s and women’s healthcare.
Despite significant gains in recent decades, women remain relatively understudied as medical research subjects. As a result, medical treatments may not be as appropriate for women as they are for men, and women are more subject to adverse drug reactions than are men.
Research Question 2: Reaching the Underserved
What models or approaches have been successful in engaging and retaining people in systems of healthcare, especially the underserved, the “difficult to reach,” or low literacy populations? Are there sex/gender differences in the effectiveness of these approaches?
There are a variety of approaches being implemented to engage and retain the underserved in systems of healthcare. These approaches include community health workers, an emphasis on cultural competency, reaching people where they are, and providing information in the appropriate language or at the appropriate literacy level to facilitate understanding. Efforts to recruit populations into care focus on using community health workers and removing barriers to access (e.g., providing transportation or taking care to the people). Efforts to retain populations focus on ensuring that healthcare providers are aware of and responsive to cultural needs, including different traditions, expectations, values, and languages. Implementing such programs requires strong organizational leadership, adequate funding, and ongoing attention to overcome institutional barriers and resistance to change.
Limited efficacy data are available on the effectiveness of such programs, but available data suggest that such programs can be very effective in getting underserved populations into the system to receive care. In particular, efforts to work with community-based partners seem promising. Both men and women have been reached by efforts undertaken in partnership with community groups (e.g., religious organizations) which help promote knowledge of risk, screening, and positive health behaviors as well as the utilization of preventive and chronic care to improve health outcomes. Data are lacking, however, on the cost-effectiveness of such programs, and on whether there are gender-differences in the effectiveness of these programs.
Research Question 3: Systems Approach and Insurance/Cost Trends
What are the trends in demographics, service delivery, costs, insurance, or other sectors that could be addressed via a systems approach? To what extent are patients reimbursed for care for specific services (i.e., prevention, mental health, etc.)? Are there gender or sex differences in out-of-pocket patient costs?
The U.S. healthcare system is a patchwork overlay of a number of distinct systems of care and a variety of programs intended to serve as safety nets. Consequently the resulting system is imbalanced in many ways that complicate access to care and fail to maximize overall quality of care. Thus, despite spending more money per capita on healthcare than other industrialized nations, the quality of care in the United States remains poor by comparison. U.S. patients have been estimated to receive a little over half of the care they should receive. Other nations perform better, as do systems such as the Department of Veterans Affairs that are more structured and take advantage of technological advances to coordinate and improve quality of care for their beneficiaries. Thus, systems-level changes to the U.S. healthcare system likely would result in substantial improvements to quality of care, as well as a reduction in disparities and potentially a reduction in overall costs. Other large efforts within the healthcare system (e.g., the effort to create patient-centered care), may be good models or natural allies for efforts to promote gender-based care.
Nearly a fifth of the U.S. population lacks health insurance coverage. Slightly more women than men have health insurance coverage; one contributing factor is that women are more likely to get public assistance through Medicaid because of pregnancy. Men are more likely to hold health insurance policies in their own names, while women are more likely to be covered as dependents, making them vulnerable to disruptions in care due to death and divorce (or because a husband is older and retires before his wife is eligible for Medicare). Income is highly associated with private health insurance status, with higher-income people having more coverage. Lack of health insurance is associated with worse health outcomes across the board, including increased mortality rates and the receipt of fewer preventive services.
Women are financially disadvantaged compared with men and also have greater family responsibilities. This makes healthcare costs, including out-of-pocket costs, a greater burden for women than for men. Women pay a larger percentage of their income out of pocket for prescription drug coverage and also are more likely than men to skip needed doses of medications because of cost limitations. Because of their lower incomes, women also may be more sensitive to differences in co-payment amounts, thus contributing to poorer quality of care and reduced care outcomes.
Research Question 4: Integrating a Model Program
How does a service delivery site successfully integrate a model program into its current infrastructure of delivering care?
There are very few currently existing gender-based approaches to medicine. There are a substantial number of programs that are designed to serve women, and a smaller (yet growing) number of programs designed to serve men. The literature on existing programs tends not to contain much more than anecdotal details pertaining to how to successfully implement model programs, instead focusing on a description of such programs and results to date. The OWH-sponsored Centers of Excellence (CoEs) have been pioneers in this field, and some of the best data about how to implement new model programs come from the CoEs. Data on OWH’s Community Centers of Excellence (CCOEs) is still emerging.
The themes that emerged from our analysis included the following:
• Funding is critical: Any new model program must begin with an initial funding source, but also must work to develop ongoing funding.
• Leadership matters: To create change, strong advocates for change must exist within organizations.
• Partnerships are essential: Community partners help to build support and spread the word, and also can be invaluable sources of funding.
• Market research sets the foundation: Model programs must be embraced by the people they are designed to serve, as well as the people who are being asked to implement them. Formative research with affected patients and staff is essential to identifying and overcoming barriers.
• Flexibility helps: Each healthcare setting is unique, and model programs may need to be tailored to individual healthcare settings.
Research Question 5: Sex- and Gender-Based Healthcare Practices
How effective are sex- and gender-based healthcare practices? What measures have been used to determine the effectiveness of these practices? What barriers exist to translating/adapting these approaches into clinical practice?
Gender-based healthcare practices—i.e., medical care that effectively addresses differences in men’s and women’s healthcare needs—is still in its infancy. As such, almost no data exist on the overall effectiveness of such approaches. We suspect that when gender-based medical practices are fully implemented, they will be highly effective. However, this assumption is speculative because this promising area of evidence-based medicine is itself in its infancy.
The women’s health movement, however, is beginning to produce efficacy results, and these are quite promising. For now, women’s care has primarily meant the treatment of women in a women-only setting. Accordingly, women’s health clinics have arisen in the United States as well as in other countries. Universally, the women who attend such clinics rate their overall satisfaction as quite high. In addition, however, studies are showing that these women are receiving better quality care, especially better preventive care on traditional women’s issues (e.g., screening mammography). CoEs clearly are leaders in this kind of woman-specific care, and the CoE model, as a women’s healthcare model, has been successful.
The primary barriers to implementing this kind of women’s care model are inertia (that is, a lack of extrinsic motivators to change the way care has always been delivered), as well as insufficient funding and space. Having a national recognition program like that provided by the CoEs and CCOEs is very helpful in this regard.
Data to demonstrate the effectiveness of sex- and gender-based approaches to care are extremely sparse. Women are still at a deficit in terms of their inclusion in medical research trials. Likewise, existing reporting systems both fail to report on gender and do not collect adequate sample sizes to allow for gender-based analysis. These issues are slowly being addressed.
Research Question 6: Approaches to Improving Care
How effective is a focus on clinical care at improving women’s healthcare? How effective are systemic improvements (i.e. more women in professorships/research positions or emphasis on women’s health in medical school curriculum) at improving women’s healthcare? Are there other factors (e.g. continuity of care) that may be more important to women than to men or to women’s outcomes vs. men’s outcomes?
Clinical care interventions to create women’s health centers appear to be effective in improving women’s preventive care. Likewise, there is anecdotal evidence that increasing the number of women leaders in healthcare improves care for women, and substantial evidence that male and female doctors communicate and interact with patients in different ways. While limited efforts are being made to increase the amount of gender-specific information in various curriculums, we found no data to demonstrate the effectiveness of this approach in improving overall care. We also found evidence that women have different care preferences than men, but again no data to suggest whether attention to these areas will substantially improve care for women.
Much of the burden of achieving the goal of gender-specific medicine will fall to physicians. To accomplish this mission will undoubtedly require changes in clinical care; increasing parity in terms of women and minority medical leadership; better training for the entire medical community on sex- and gender-based differences; and attention to other aspects of care, such as communication and expectations that may differ in important ways between male and female patients. Patient education also will be critical to the success of this effort.
Research Question 7: Targeting Boys and Men
How can programs targeting boys and men be created to recruit and retain them in the healthcare system? Are programs such as patient advocate or patient navigator more needed or more effective for men at getting them into the system and to needed care?
It appears that men face additional barriers to care, perhaps the most important of which is a generalized male reluctance to seek preventive or routine care. This reluctance puts men at risk because it means that they are more likely to delay care until their need for it is critical, by which time multiple opportunities for prevention and early intervention may already have been missed. This assessment is based on mostly anecdotal evidence; we did not uncover any studies that systematically identified access patterns for men and women.
We found several examples of programs to encourage men to receive more preventive care, and many of these use approaches we identified as having potential to reach men. These include creating settings that are more appropriate for male patients and utilizing women as an avenue to reach men (although we note several drawbacks of relying on women as a means to reach men).
Conclusions and Recommendations
We conclude with the recommendation that OWH build on the success of its current CoE model to move toward a gender-based model of healthcare. Such a model will consider the needs of men as well as women, and will help the United States to create a healthcare system that provides better care for all Americans. As part of this effort, we recommend additional research into sex and gender differences, improved data collection, an integration of men’s care into existing CoEs and CCOEs, cooperation with other nations, and efforts to educate both the public and the medical community about the importance of gender-based care.
Our conclusions include the following:
• CoEs have been successful.
• Neither men nor women are receiving optimal care from the U.S. healthcare system, with both genders experiencing significant and well-documented disadvantages in healthcare.
• Both men and women would benefit from a move toward a gender-based system of care in the United States.
• Despite the promise of a gender-based approach, significant research gaps remain.
• All health trends need to be considered from a gender perspective.
• Progress toward this goal will require new and continued efforts on multiple fronts.
We discuss the following possible leadership areas as recommendations for OWH:
• OWH should consider working with existing CoEs and CCOEs to create a new model of care at these sites that is gender-based for both men and women.
• In concert with other Federal agencies working on these issues, OWH should help to establish reporting guidelines and systems that aid in the collection of data.
• To advance gender-based models of care, OWH could partner with other Federal agencies to fund and develop instruments and efficacy studies that would document whether new guidelines improve care as anticipated.
• OWH could use its influence to highlight and publicize all aspects of healthcare where gender might be an important variable to be considered.
• OWH could work with other Federal agencies to encourage the study of sex and gender differences in the application of patient-navigator programs or other efforts to reach the underserved.
• OWH should learn from the efforts of other nations to promote gender-based care.
• Likewise, it might be desirable for OWH to bring together various stakeholders promoting gender-based care to learn from these efforts.
• Finally, we recommend continued efforts to educate health professionals and the public about critical sex- and gender-based differences in care.
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