Collection Of Ethnicity Data Research Articles

Detection of 549 new HLA alleles in potential stem cell donors from the United States, Poland and Germany.

We characterized 549 new human leukocyte antigen (HLA) class I and class II alleles found in newly registered stem cell donors as a result of high‐throughput HLA typing. New alleles include 101 HLA‐A, 132 HLA‐B, 105 HLA‐C, 2 HLA‐DRB1, 89 HLA‐DQB1 and 120 HLA‐DPB1 alleles. Mainly, new alleles comprised single nucleotide variations when compared with homologous sequences. We identified nonsynonymous nucleotide mutations in 70.7% of all new alleles, synonymous variations in 26.4% and nonsense substitutions in 2.9% (null alleles). Some new alleles (55, 10.0%) were found multiple times, HLA‐DPB1 alleles being the most frequent among these. Furthermore, as several new alleles were identified in individuals from ethnic minority groups, the relevance of recruiting donors belonging to such groups and the importance of ethnicity data collection in donor centers and registries is highlighted.

Young Adults’ Food Selection Patterns: Relations With Binge Eating and Restraint

Young Adults’ Food Selection Patterns:Relations With Binge Eating and Restraint Janet A. Lydecker, Allison A. Palmberg, Katherine Vatalaro Hill, and Suzanne E. Mazzeo Binge eating is increasingly prevalent in college students (White, Reynolds-Malear, & Cordero, 2011). Binge episodes involve eating an objectively large quantity of food in a discrete amount of time and a perceived lost control over eating (American Psychiatric Association [APA], 2013). Strong negative affect commonly precedes and follows each episode. Binge eating is associated with severe obesogenic consequences such as diabetes, impaired heart function, and intestinal problems (Thompson, Roehrig, & Kinder, 2007). Individuals who binge eat report impaired functioning in personal, occupational, and social domains (Hudson, Hiripi, Pope, & Kessler, 2007). Addressing behaviors antecedent to a binge, such as food selection and acquisition, is an important part of understanding and creating interventions for this maladaptive behavior. Extant research has evaluated the selection and acquisition of food in laboratory settings (Raymond, Bartholome, Lee, Peterson, & Raatz, 2007), but fails to account for access to food within a specific community, such as a college campus. Context is important in understanding and treating binge eating because it influences perceived behavioral control of food selection. Universities provide ideal settings for the study of food selection because students have measurable options for food, a variety of choices within close proximity to where they live, and more equitable access to food options because of limited locations and dining plans, which have somewhat buffered prices. College is also a period during which young adults begin to make independent and long-lasting choices about what and how they eat (Cousineau, Goldstein, & Franko, 2004). Despite the critical developmental [End Page 493] period and unique environment, associations among students’ eating options, behaviors, and environment have not been evaluated together. Knowing how disordered eating relates to dining options will inform development of college-based interventions. The emotion regulation theory of binge eating (Chen, Matthews, Allen, Kuo, & Linehan, 2008) views disordered eating as a maladaptive attempt to cope with intense emotions, rather than a response to physiological hunger (Napolitano & Himes, 2011). Eating carries an expectation of escape from negative affect through the transfer of attention from the negative affect to a concrete object (i.e., food; Heatherton & Baumeister, 1991). Binge eating is a maladaptive coping strategy because it provides initial momentary relief, but ultimately negative affect (e.g., guilt and disgust) follows (APA, 2013). Before emotional eating can occur, students must (consciously or nonconsciously) decide what foods they will emotionally eat and must acquire the food. Awareness of food selection behavior can help college health providers assist students in identifying trigger foods and locations. This study contributes to existing research by assessing whether food selection differs in the presence of an emotion within the unique context of a college campus. METHOD Data were collected in two phases. First, 500 participants completed online surveys and received class credit for participating. Surveys measured disordered eating using the Three-Factor Eating Questionnaire (Mazzeo, Aggen, Anderson, Tozzi, & Bulik, 2003), a 36-item survey with three subscales: Restraint (TFEQ-R), Disinhibition (TFEQ-D), and Hunger (TFEQ-H). Surveys also asked where students ate both typically and when feeling emotions, using all locations accepting the institution’s dining plan. Second, 283 participants voluntarily completed a survey using an audience response system during class. These surveys also asked where students ate typically and when feeling strong emotions, but used categories of locations accepting the dining plan. Participants keyed answers using handheld devices called clickers. Clickers offer a nonjudgmental, nonthreatening format for self-report, because participants answer without providing identifiable data and large samples can be collected in a group context (LaBrie, Earleywine, Lamb, & Shelesky, 2006). Online survey respondents were students in psychology classes at a large Mid-Atlantic university (n = 500; Mage = 19.71). Clicker survey respondents were from large, nonpsychology classes at the same university (n = 283; Mage = 20.98). Online survey respondents were racially diverse: 22.8% African American (n = 114), 15.2% Asian American (n = 76), and 45.8% White (n = 229), largely representative of this urban, public university. Participants selected among ethnicity categories and had the option to use a write-in space. Clicker surveys did not collect ethnicity data to maintain...

Ian Anderson: transforming Indigenous medicine and education

Ian Anderson: transforming Indigenous medicine and education

Language diversity and attainment in schools: implication for policy and practice

This research examines pupil performance differences among the main ethnic groups in British Schools by language spoken at home. The main findings of the data confirm that there were substantial differences in performance between different ethnic groups at the end of GCSEs (General Certificate of Secondary Education). However, the study argues that none of these ethnic categories are homogenous. A further analysis of the data by language spoken highlighted the potential of language data to help disaggregate census ethnic categories and give greater insight into the performance of different groups in schools. In particular, the White Other and the Black African groups had the greatest linguistic diversity and attainment patterns. In conclusion, this study confirms that analysing an ethnic group’s performance by language adds to our understanding of the associations between language and ethnic background. The article concludes with policy implications for collection and use of ethnic and language data at national and international level.

Did We Have an Impact? Changes in Racial and Ethnic Composition of Patient Populations Following Implementation of a Pilot Program.

High-quality data are necessary to eliminate health disparities, and are necessary in cancer prevention and control. A pilot project to improve the collection of race and ethnicity data was undertaken. The approach included train-the-trainer and staff training, and racial and ethnic categories were expanded to include "granular ethnicity" or ancestry terms in the patient registration system at five acute care hospitals in Rhode Island. The self-reported racial and ethnic distribution of the patient population was examined for each pilot hospital. Two of the five pilot hospitals reported significant increases in the identification of Hispanic patients. At two other pilot hospitals, the proportion reporting unknown on either race or ethnicity was reduced. Evidence that Hispanics struggle to identify with existing racial categories is also highlighted. These results suggest that a modest program of staff training and resources can significantly increase the identification of racial and ethnic minorities, improving the quality of hospital and state cancer registry data. This has many possible benefits, including better alignment with language services for the patient population, better understanding of the healthcare needs of different racial and ethnic groups, and better strategies to not only address disparities, but also assess those efforts.

Hospital Practices in the Collection of Patient Race, Ethnicity, and Language Data: A Statewide Survey, California, 2011

California mandates hospitals to collect and report patient race, ethnicity, and primary spoken language (REL). A lack of specific guidelines and standardized practices on how data should be collected has contributed to inconsistent and incomplete data.General acute care hospitals in California completed a survey to elucidate practices regarding collection and auditing of patient REL. Nearly all hospitals reported collecting race and/or ethnicity (97%). The majority of hospitals used standardized forms for collection, and 75% audited patient information for completeness. Popular accepted strategies to improve the quality and completeness of REL included collecting data at the first encounter, routine staff training, incorporating REL questions into existing admissions forms, and developing and enforcing hospital policies regarding data collection.California hospitals are collecting information on patient REL as mandated, but variation in data collection exists. Hospitals endorse many reasonable approaches for standardization, and may benefit from standardized data collection and auditing practices.

The collection and utilisation of patient ethnicity data in general practices and hospitals in the United Kingdom: a qualitative case study.

Although the collection of patient ethnicity data is a requirement of publicly funded healthcare providers in the UK, recording of ethnicity is sub-optimal for reasons that remain poorly understood. We sought to understand enablers and barriers to the collection and utilisation of ethnicity data within electronic health records, how these practices have developed and what benefit this information provides to different stakeholder groups. We undertook an in-depth, qualitative case study drawing on interviews and documents obtained from participants working as academics, managers and administrators within the UK. Information regarding patient ethnicity was collected and coded as administrative patient data, and/or in narrative form within clinical records. We identified disparities in the classification of ethnicity, approaches to coding and levels of completeness due to differing local, regional and national policies and processes. Most participants could not identify any clinical value of ethnicity information and many did not know if and when data were shared between services or used to support quality of care and research. Findings highlighted substantial variations in data classification, and practical challenges in data collection and usage that undermine the integrity of data collected. Future work needs to focus on explaining the uses of these data to frontline clinicians, identifying resources that can support busy professionals to collect standardised data and then, once collected, maximising the utility of these data.

Moving to patient reported collection of race and ethnicity data: implementation and impact in ten hospitals.

The purpose of this paper is to examine the feasibility of collecting standardized, patient reported race and ethnicity (RE) data in hospitals, and to assess the impact on data quality and utility. Part of a larger evaluation that included a comprehensive assessment. Sites documented RE data collection procedures before and after program implementation. Primary data collected through qualitative interviewing with key respondents in ten hospitals to assess implementation. Nine hospitals provided RE data on the same patients before and after implementation new data collection procedures were implemented to assess impact. Implementation went smoothly in nine of ten hospitals and had substantial effects on the hospital staff awareness on the potential for disparities within their hospitals. New procedures had minimal impact on characterization of readmitted patients. This study demonstrated that it is feasible for staff in a diverse group of hospitals to implement systematic, internally standardized methods to collect self-reported RE data from patients. Although this study found little impact patients' demographic characterizations, other benefits included greater awareness of and attention to disparities, uncovering small pockets of minorities, and dramatically increased RE data use in quality improvement efforts.

General practice ethnicity data: evaluation of a tool

There is evidence that the collection of ethnicity data in New Zealand primary care is variable and that data recording in practices does not always align with the procedures outlined in the Ethnicity Data Protocols for the Health and Disability Sector. In 2010, The Ministry of Health funded the development of a tool to audit the collection of ethnicity data in primary care. The aim of this study was to pilot the Ethnicity Data Audit Tool (EAT) in general practice. The goal was to evaluate the tool and identify recommendations for its improvement. Eight general practices in the Waitemata District Health Board region participated in the EAT pilot. Feedback about the pilot process was gathered by questionnaires and interviews, to gain an understanding of practices' experiences in using the tool. Questionnaire and interview data were analysed using a simple analytical framework and a general inductive method. General practice receptionists, practice managers and general practitioners participated in the pilot. Participants found the pilot process challenging but enlightening. The majority felt that the EAT was a useful quality improvement tool for handling patient ethnicity data. Larger practices were the most positive about the tool. The findings suggest that, with minor improvements to the toolkit, the EAT has the potential to lead to significant improvements in the quality of ethnicity data collection and recording in New Zealand general practices. Other system-level factors also need to be addressed.

Race, Ethnicity, and Language Data Collection by Health Plans: Findings from 2010 AHIPF-RWJF Survey

Previous national surveys have documented the increase in collection of race, ethnicity, and language (REL) data by health plans. The latest 2010 survey created an opportunity to examine recent trends and to determine whether the Patient Protection and Affordable Care Act (ACA) had an effect on plans' practices. A 51-item survey was sent to all health plans included in a national listing of plans (N = 250). The majority of responding plans collect data on members' REL. The frequency of race and ethnicity data collection was only slightly greater in 2010 than in 2008, 78.7% and 75% respectively. By 2010, 89.3% of health plans were collecting language data of their members, up from 74% in 2008 and 57.3% in 2003. Since 2008, collection and use of REL data continues gradually to increase among health plans, demonstrating the industry's commitment to address racial/ethnic gaps in care.

Can ethnicity data collected at an organizational level be useful in addressing health and healthcare inequities?

ObjectiveFollowing arguments made in the USA, the UK and New Zealand regarding the importance of population-level ethnicity data in understanding health and healthcare inequities, health authorities in several Canadian provinces are considering plans to collect ethnicity data from patients at the point of care within selected healthcare organizations. The purpose of this paper is to examine the potential quality, utility and relevance of ethnicity data collected at an organizational level as a means of addressing health and healthcare inequities.DesignWe draw on findings from a recent Canadian study that examined the implications of collecting ethnicity data in healthcare contexts. Using a qualitative design, data were collected in a large city, and included interviews with 104 patients, community and healthcare leaders, and healthcare workers within diverse clinical contexts. Data were analyzed using interpretive thematic analysis.ResultsOur results are discussed in relation to discourses reflected in the current literature that require consideration in relation to the potential utility and relevancy of ethnicity data collected at the point of care within healthcare organizations. These discourses frame excerpts from the ethnographic data that are used as illustrative examples. Three key challenges to the potential relevance and utility of ethnicity data collected at the level of local healthcare organizations are identified: (a) issues pertaining to quality of the data, (b) the fact that data quality is most problematic for those with the greatest vulnerability to the negative effects of health inequities, and (c) the lack of data reflecting structural disadvantages or discrimination.ConclusionThe quality of ethnicity data collected within healthcare organizations is often unreliable, particularly for people from racialized or visible minority groups, who are most at risk, seriously limiting the usefulness of the data. Quality measures for collecting data reflecting ethnocultural identity in specific healthcare organizations may be warranted – but only if mechanisms exist or are developed for linking ethnicity with measures of perceived discrimination, stigmatization, income level, and other known contributors to inequities. Methods for linking these kinds of data, however, remain underdeveloped or non-existent in most healthcare organizations.

Can we, should we, measure ethnicity?

This paper discusses some of the methodological issues in the measurement of ethnicity in the social survey. Measurement encounters two sets of interrelated problems: those of the definition and nature of ethnicity as a social phenomenon and its individual subjective experience and those of the derivation of valid and reliable categories. Commonly used single-item measures fail to capture many ethnic groups and may be of limited value. Extending categories in these will capture more groups, but can be unwieldy and produce small cell counts, whereas multiple measures can be more successful, but are practically less viable in general surveys. We conclude that whilst these difficulties are probably insurmountable, a strategy that is sensitive to the presence of ethnic groups in particular localities is a way forward, but this should also be part of a more sociologically nuanced approach to the collection of ethnic data.

Improving ethnic monitoring for telephone-based healthcare: a conversation analytic study

ObjectivesMedical and healthcare organisations—including the national cancer support and helpline organisation that is the subject of this study—are expected to collect and monitor information about the ethnicity of their client...

Implementing Institute of Medicine Recommendations on Collection of Patient Race, Ethnicity, and Language Data in a Community Health Center

The Institute for Family Health is one of the first health care organizations to implement the 2009 Institute of Medicine recommendations on collection of patient race, ethnicity, and language data as a means of identifying and addressing health disparities. This paper describes the implementation process and lessons learned from the project.

Increasing Diversity in Governance and Management

Disparities in care continue to be a major problem in the healthcare system. This issue will no doubt continue to grow in importance, considering the fact that racial and ethnic minorities currently represent one third of the U.S. population and are projected to become a majority of the population in 2042. This is why five major healthcare organizations--the American Hospital Association (AHA), American College of Healthcare Executives (ACHE), Association of American Medical Colleges, Catholic Health Association of the United States, and National Association of Public Hospitals and Health Systems--have come together to form the Equity of Care initiative to address disparities in care. These associations decided to focus their efforts to eliminate healthcare disparities on three core elements: * Increasing the collection of race, ethnicity, and language data * Increasing cultural competency training * Increasing diversity in leadership In a series of five columns in this journal, of which this is the first, representatives from the Equity of Care associations will address all of these topics. ACHE's focus, and the focus of this column, is increasing diversity in healthcare leadership. INCREASING DIVERSITY ON THE BOARD Although minorities represent approximately 29 percent of patients nationally, according to the AHA and the Institute for Diversity in Health Management, they comprise only 14 percent of hospital board members and an average of 14 percent of leadership positions. AHA, along with the Institute and the Center for Healthcare Governance, is tackling the issue of increasing diversity in healthcare governance through its Hospital Trustee Professionalism Program and Minority Trustee Candidate Registry. Hospital Trustee Professionalism Program is a series of AHA-sponsored educational programs designed to prepare participants for service on a hospital or health system board. program, which is available for free to interested candidates who register online to attend, gives potential board members an idea of what it is like to serve on a board, including roles and responsibilities and unique challenges faced by healthcare governing boards. Institute and the Center work with state hospital associations to identify minority professionals whom those associations can encourage to apply. Sessions are held quarterly on a rotating schedule with stops in several major U.S. cities. Since the program started in 2009, it has been conducted in 15 cities; 500 individuals have been trained, and 35 of those participants have been placed on boards. The program is a success in that we have begun a conversation with boards and CEOs about this issue, and we now have a tool to help them identify professionals from minority groups to serve on their boards, says Frederick D. Hobby, CDM, president and CEO of the Institute for Diversity in Health Management, based in Chicago, Illinois. Through the Hospital Trustee Professionalism Program, the AHA hopes to see an increase in the number of board placements in 2013, when it adds an early identification component that will help gain CEOs' and other senior leaders' buy-in of potential board members on the front end of the board member selection process. We'll be asking CEOs and board members to identify minorities within their markets whom they are already considering for board positions and encouraging them to take our one-day symposium, says Hobby. program also maintains the Minority Trustee Candidate Registry, an online database containing profiles and resumes of each individual who has participated in the training. Hospitals and medical centers can log in to the registry and search for available candidates in their community to fill a board vacancy. …

Health equity audits in general practice: a strategy to reduce health inequalities

This quality improvement project was set in Tower Hamlets, east London, with the aim of reducing health inequalities by ethnicity, age and gender in the management of three common chronic diseases. Routinely collected clinical data were extracted from practice computer systems using Morbidity Information Query and Export Syntax (MIQUEST) and Egton Medical Information Systems (EMIS) Web, between 2007 and 2010. Health equity audits for 38 practices in Tower Hamlets primary care trust (PCT) were constructed to cover key process and outcome measures for each of the three major chronic diseases: coronary heart disease (CHD), type 2 diabetes mellitus and chronic obstructive pulmonary disease (COPD). The equity audit was disseminated to practices along with facilitation sessions. We show evidence of baseline inequalities in each condition across the three east London PCTs. The intervention tracked four key indicators (cholesterol levels in CHD, blood pressure and haemoglobin A1c levels in diabetes and % smoking in COPD). Performance for physician-driven interventions improved, but smoking rates remained static. All ethnic groups showed improvement, but there was no evidence of a reduction in differences between ethnic groups. Reductions in gender and age group differences were noted in diabetes and CHD. Using routine clinical data, it is possible to develop practice-level health equity reports. These can unmask previously hidden inequalities between groups, and promote discussion with practice teams to stimulate strategies for improvements in performance. Steady improvements in chronic disease management were observed, however, systematic differences between ethnic groups remain. We are not able to attribute observed changes to the audits. These reports illustrate the importance of collecting ethnicity data at practice level. Tools such as this audit can be adapted to monitor inequalities in primary care settings.

Bienvenidos: The Initial Phase of Organizational Transformation to Enhance Cross-cultural Health Care Delivery in a Large Health Network

AbstractStatistics from the U. S. Census Bureau continue to demonstrate that the racial and ethnic makeup of many communities is diversifying. In order to provide high-quality, equitable, and culturally sensitive healthcare, many hospitals and health care organizations are responding to their changing patient demographics. The following article will demonstrate how Lehigh Valley Health Network (LVHN) in Allentown, Pennsylvania, had a seemingly minor patient encounter that ultimately was responsible for transforming the health network’s method of delivering high-quality and culturally appropriate care for its diverse patient population. This case study highlights “Bienvenidos,” which started from an interaction with a patient, a play center director, and a physician. This interaction ultimately led to an organizational metamorphosis at one of the health network’s hospital sites that spread across the entire network. We present six key factors that led to this kind of organizational change across the network: 1) Transformational Event(s), 2) Leadership Commitment, 3) Creating a Shared Vision, 4) Assessment and Strategic Program Planning, 5) Engaging Champions, 6) Outcome Measurement and Communication. These steps have led to a reduction in no-show rates and an increase in patient satisfaction. Since “Bienvenidos,” many network-wide strategies, such as explicit employee behavioral expectations regarding respectful interactions across cultures; modification of patient race, ethnicity, and language preference data collection; addition of questions about cultural needs on patient satisfaction surveys; mandatory staff education on diversity and cultural awareness; as well as senior management-level incentive goals, have been put into place that have helped LVHN continue to provide high-quality, culturally appropriate care. This commitment to cultural awareness remains strong—with support from a full-time diversity/cultural awareness liaison, a dedicated physician leader, and a 16-member Cultural Awareness Leadership Council. In these and other ways, respect for difference and cultural awareness has become a part of daily operations and interactions, in many ways because of the initial foundation formed by the “Bienvenidos” initiative.

The quest for an ethnic identifier in Ireland

The tragic death of Savita Halappanavar on Wednesday 21st November 2012 in University Hospital Galway dramatically focused national [1] and international [2] attention on the issue of access to a termination in Ireland where the life and health of a pregnant woman are threatened. However, her death also raises important and wider issues around equity in health status, health service access and health service uptake for the minority groups within Ireland. It is clear that issues of ethnicity [3] and race [4] in Ireland are clearly contested. However, this is not a reason or excuse for inaction. Ireland’s inaction on the issue of transparency in the health of minority groups is unacceptable. Addressing the issue of race, the US Associate Director for Minority Health stated almost 20 years ago that ‘race should be viewed within public health surveillance as a sociological phenomenon’ and that its ‘significance is mainly derived from the social arrangements’ [5]. He went on to describe both ethnicity and race ‘as markers used to better understand the risk factors’. The Health Service Executive’s Social Inclusion Unit stated in 2009 that ‘the need for more consistent collection of Ethnic Equality data is underpinned by Irish equality legislation and an extensive policy framework’ [6]. However, at the end of 2012, we still have no ethnic identifier routinely being used in relation to health data. This is odd given asylum applications, for example, peaked in Ireland a decade ago in 2002 at 11,634 [7]. The realisation for the need of this type of information is hardly new in Ireland [8]. Action 12 of the Department of Health and Children’s 2004 Health Information Strategy states that: ‘To allow for the analysis of health data by key subgroups as described in the National Anti-Poverty Strategy (1997) and related policies, relevant health information systems will incorporate the required degree of functionality and record, as appropriate, the attributes that on their own or through their association with poverty or social exclusion contribute to inequalities in health. These attributes include: age, gender, socio-economic group, being disabled, being homeless, living in institutions, race, membership of the Traveller community or other ethnic minority group, including refugee or asylum seeker and family status (e.g. lone parent)’ [9]. At present, significant resources are having to be spent in targeted research to explore the issue of health status of the minority groups. The results are not surprisingly shocking [10]. What is needed, however, is the routine collection, analysis and dissemination of such information. The absence of an ethnic identifier in Ireland sits comfortably beside other deliberate information deficits. These include the continuing absence of postcodes, small area health data and the absence of routine social class classification of morbidity and mortality data. These deficits are not accidental [11]. They are designed to hinder meaningful analysis of health data [12]. O’Toole [13] neatly describes such statistics in Ireland as ‘the unknown known’, stating that ‘you have to positively decide not to know the awkward fact’.

PS2-01: DISparities and Culture: Outcomes in Vitality Research (DISCOVeR) Program

Background/Aims National health priorities include reduction of health disparities among racial/ethnic minorities. The cultural and linguistic diversity in the Palo Alto Medical Foundation (PAMF) service areas presented a compelling case for improving the collection of race, ethnicity, ancestry and primary language (R/E/A/L) data to accurately assess and address health disparities across all racial/ethnic groups.

Brazil in black and white? Race categories, the census, and the study of inequality

Many scholars advocate the adoption of a black-and-white lens for the analysis of racial inequality in Brazil. Drawing on a nationally representative dataset that includes race questions in multiple formats, we evaluate how removal of the ‘brown’ category from the census or other social surveys would likely affect: (1) the descriptive picture of Brazil's racial composition; and (2) estimates of income inequality between and within racial categories. We find that a forced binary question format results in a whiter and more racially unequal picture of Brazil through the movement of many higher income mixed-race respondents into the white category. We also find that regardless of question format, racial inequality in income accounts for relatively little of Brazil's overall income inequality. We discuss implications for public policy debates in Brazil, and for the broader scientific and political challenges of ethnic and racial data collection and analysis.