The unavoidable costs of ethnicity : a review of evidence on health costs

This report was commissioned by the Advisory Committee on Resource Allocation (ACRA), and prepared by the Centre for Health Services Studies (CHESS) and the Centre for Research in Ethnic Relations (CRER) at the University of Warwick. The NHS Executive does not necessarily assent to the factual accuracy of the report, nor necessarily share the opinions and recommendations of the authors. The study reviews the evidence concerning the degree to which the presence of populations of minority ethnic origin was associated with ‘unavoidable additional costs’ in health service delivery. While local health authorities retail full autonomy in their use of funds allocated to them under the Hospital and Community Health Services formula, the size of that budget is governed by a set of weightings applied to their population, to allow for factors known to influence levels of need, and the costs of providing services. The study began by considering the definitions used in describing ‘ethnicity’ and ethnic groups in relevant medical and social policy literature. It is clear that no fixed set of terms can be adopted, and that flexibility is required to respond to social changes. The terms used in the 1991 Census, with additions to allow for local and contemporary developments, provide a suitable baseline but require additional information on religion language and migration history for clinical and health service delivery planning. There have been notable developments in health service strategy to meet the needs of black and minority ethnic groups which have been encouraged by good practice guidelines and local initiatives. Together with research into epidemiology and ethnic monitoring of services, these have enlarged understanding of the impact of diversity. A conceptual model is developed which explores the potential for such diversity to lead to variations in the cost of providing health services to a multi-ethnic population. The research team reviewed the existing published evidence relating to ethnic health and disease treatment in medical, social science, academic and practitioner literature, using conventional techniques. Additional evidence was located through trawls of ‘grey’ literature in specialist collections, and through contacting all English health districts with a request for information. A number of authorities and trusts provided written and oral evidence, and a bibliography of key materials is provided. Key issues considered include the need for and use of, interpreter and translation services, the incidence of ‘ethnically-specific’ disease, and variations in the prevalence and cost of treating ‘common’ conditions in minority ethnic populations. Sources of variation are discussed, and a ‘scoping’ approach adopted to explore the extent to which these variations could be adequately modelled. It is clear that while some additional costs can be identified, and seen to be unavoidable, there are other areas where the presence of minority populations may lead to lessened pressures on budgets, or where provision of ‘ethnic-specific’ facilities may be alternative to existing needs. The literature provides a range of estimates which can be used in a modelling exercise, but is deficient in many respects, particularly in terms of precise costs associated with procedure and conditions, or in associating precise and consistent categories of ethnic group with epidemiological and operational service provision data. Certain other activities require funding to set them up, and may not be directly related to population size. There is considerable variation in the approaches adopted by different health authorities, and many services are provided by agencies not funded by NHS budgets. The study was completed before the announcement of proposed changes in health service commissioning which may have other implications for ethnic diversity. The presence of minorities is associated with the need to provide additional services in respect of interpreting and translation, and the media of communication. In order to achieve clinical effectiveness, a range of advocacy support facilities or alternative models of provision seem to be desirable. Ethnic diversity requires adaptation and additional evidence in order to inform processes of consultation and commissioning. Minority populations do create demands for certain additional specific clinical services not required by the bulk of the majority population: it is not yet clear to what extent the reverse can be stated since research on ‘under-use’ is less well developed. Some variations in levels of need, particularly those relating to established clinical difference in susceptibility or deprivation, are already incorporated in funding formulae although it is not clear how far the indicators adequately reflect these factors. Costs are not necessarily simply related to the size of minority populations. The provision of services to meet minority needs is not always a reflection of their presence, but has frequently depended upon the provision of additional specific funds. There is a consensus that the NHS research and development strategy should accept the need for more work to establish the actual levels of need and usage of service by ethnic minority groups, and that effort should be made to use and improve the growing collection of relevant information through ethnic monitoring activities. A variety of modelling techniques are suggested, and can be shown to have the potential to provide practical guidance to future policy in the field. Current data availability at a national or regional scale is inadequate to provide estimates of the ‘additional costs of ethnicity’ but locally collected data and the existence of relevant policy initiatives suggest that a focused study in selected districts would provide sufficiently robust information to provide reliable estimates. The review has demonstrated that there are costs associated with the presence of minority ethnic groups in the population which can be shown to be unavoidable and additional, but that others are either ‘desirable’ or ‘alternative’. It would be wrong to assume that all cost pressures of this nature are in the same direction. Our study has drawn attention to deficiencies in data collection and budgeting which may hinder investigation of the effectiveness of the service in general. The process of drawing attention to ethnic minority needs itself leads to developments in services which are functional and desirable for the majority population

An overview of the research evidence on ethnicity and communication in healthcare

• The aim of the present study was to identify and review the available research evidence on 'ethnicity and communication' in areas relevant to ensuring effective provision of mainstream services (e.g. via interpreter, advocacy and translation services); provision of services targeted on communication (e.g. speech and language therapy, counselling, psychotherapy); consensual/ participatory activities (e.g. consent to interventions), and; procedures for managing and planning for linguistic diversity

Review of the occupational health and safety of Britain’s ethnic minorities

This report sets out an evidence-based review on work-related health and safety issues relating to black and minority ethnic groups. Data included available statistical materials and a systematic review of published research and practice-based reports. UK South Asians are generally under-represented within the most hazardous occupational groups. They have lower accident rates overall, while Black Caribbean workers rates are similar to the general population; Bangladeshi and Chinese workers report lowest workplace injury rates UK South Asian people exhibit higher levels of limiting long-term illness (LLI) and self reported poor health than the general population while Black Africans and Chinese report lower levels. Ethnic minority workers with LLI are more likely than whites to withdraw from the workforce, or to experience lower wage rates. Some of these findings conflict with evidence of differentials from USA, Europe and Australasia, but there is a dearth of effective primary research or reliable monitoring data from UK sources. There remains a need to improve monitoring and data collection relating to black and ethnic minority populations and migrant workers. Suggestions are made relating to workshops on occupational health promotion programmes for ethnic minorities, and ethnic minority health and safety 'Beacon' sites

Ethnicity : UK colorectal cancer screening pilot : final report

27. In summary, the overall evaluation of the UK Pilot has demonstrated that key parameters of test and programme performance observed in randomised studies of FOBt screening can be repeated in population-based pilot programmes. However, our study provides strong evidence of very low CRC screening uptake for ethnic groups in the Pilot area. This is coupled with a very low uptake of colonoscopy for individuals from ethnic groups with a positive FOBt result. 28. It has long been acknowledged that a diverse population may require diverse responses. Following the implementation of the Race Relations Amendment Act 2000, there has been a statutory duty laid upon all NHS agencies to ‘have due regard to the need to eliminate unlawful discrimination’, and to make explicit consideration of the implications for racial equality of every action or policy. 29. Because the observed overall outcomes in the UK Pilot generally compare favourably with the results of previous randomised trials of FOBt screening, the main Evaluation Group has concluded that benefits observed in the trials should be repeatable in a national roll-out. 30. However, our study indicates that any national colorectal cancer screening programme would need to very carefully consider the implications of ethnicity for roll-out, and develop a strategic plan on how best to accommodate this at both a national and local level. Based on our findings, consideration will clearly need to be given to improved access and screening service provision for ethnic minorities. 31. In order to ensure adequate CRC screening provision for a diverse UK population, and to address the explicit implications for racial equality highlighted by our findings, interventions now urgently need to be evaluated to improve access for ethnic minorities. This work should be undertaken as part of the second round of CRC screening currently underway in the English Pilot

Ethnicity data collection in the UK: the healthcare professional's perspective

The collection of ethnicity data has been demonstrated to be important in healthcare. However, despite recent efforts by the UK government, it remains incomplete and unvalidated. In order to be able to assess inequalities and target resources appropriately, it is essential to have complete and accurate data. This paper examines the reasons for the gaps in ethnicity data based on the perceptions and experiences of the healthcare professionals who are charged with collecting these data. A questionnaire was used to assess perceptions of ethnicity data collection, including any barriers encountered as well as the perceived importance of collecting these data. Respondents were asked whether routine ethnicity data collection was limited to specific disease areas, and approximately what proportion was complete in these areas. There were also questions concerning preferred methods of collection (e.g. self-report). The questionnaire was completed by 30 respondents, who included healthcare managers, clinicians, nurses and other staff working in the healthcare setting. The findings confirmed that the collection of patients’ ethnicity data is deemed important by the healthcare professionals, but showed that there remains uncertainty and unease as to how best to collect these data or how to explain to patients how the data will be used. The majority of healthcare professionals agreed that it was important to record patients’ ethnicity, but no clear rationale was given to staff about the use of these data, and no training was provided on the best way to collect the data.</p

Improving ethnic data collection for statistics of cancer incidence, management, mortality and survival in the UK

Background: • Ethnic record keeping and monitoring has been identified as being important for over the past 20 years and has often been associated with negative rather than positive reasons • There is an identified need for the collection of ethnicity in healthcare settings • There is an “Evidence desert” with few “best practice reports” • There have been recent initiatives to collect ethnicity through Hospital Admissions (e.g. Hospital Episode Statistics) and Primary Care Findings of this feasibility project: Systematic review: • There is a paucity of published evidence regarding methodology of ethnicity data collection or ethnicity profiling • Many clinical articles use ethnicity data in their analyses, health surveys or risk assessment of particular diseases, but often the data are of variable quality • Self assessed ethnicity is better than observer assessment • Official ethnicity categories need to be re-examined and modified to represent new migration patterns Professional perception: • Lack of consistency at different levels of organisations • No clear rationale for collection/use of data • Data collected without training or explanation of its use • Not enough resources for ‘research data’ in general, without adding ethnicity Focus groups perception: • No objections to providing data in a healthcare setting • Willingness to engage in research • Lack of information as to the use of the data Groups actively looking at how to collect and use ethnicity data • South Thames registry looking at cancer rates for South Asians • Healthy Londoners’ project and London Public Health Observatory initiatives • Census categories extended to capture ‘British Born’ groups • Specialist libraries and JISC-mail electronic discussion groups already set up Recommendations – need for better training and information • Need training materials/workshops to raise awareness - Patients- why your doctor should know your ethnic group? - Professionals- how to ask and explain the importance of ethnicity data collection? • Work towards a culture of routine data collection of ethnicity at GP level • Need working groups to assess collection, completeness and validation • Need more reporting of ethnicity data in the healthcare setting, in order to improve planning and delivery of services for ethnic minority group