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UNEDITED Issues in health information 3 Integrating Equity into Health Information Systems UNEDITED 2 TABLE OF CONTENTS 1. OVERVIEW4 2. HEALTH EQUITY INDICATORS7 2.1: General considerations7 2.2: Criteria and rationale for selecting health-equity indicators.7 2.3: Measuring health status and determinants 9 2.4: Measuring social position and stratification .10 3. RECOMMENDED MEASURES OF HEALTH STATUS AND HEALTH DETERMINANTS16 3.1: Health status measures16 3.2: Measures of determinants of health 18 3.3: Measures of health care.19 3.4: Measure of social and economic consequences of ill health.21 4. LINKING EQUITY-RELEVANT DATA BETWEEN INFORMATION SOURCES.23 4.1: The need to link data.23 4.2: A taxonomy for assessing health information status.24 4.3: Useful types of linkages between databases .27 5. ASSESSMENT OF WHAT IS NEEDED AND RECOMMENDATIONS32 5.1: Information needs and recommendations for equity sensitivity .32 5.2: National and subnational HIS .32 5.3: Vital registration systems33 5.4: Census.34 5.5: Small-area data sources and DSS36 5.6: Cross-country household surveys .37 5.7: Country-sponsored surveys.42 5.8: Administrative data sources42 5.9: Geographical information systems (GIS)43 5.10: Trends over time .44 5.11: Linked records.44 6. ENCOURAGING A CULTURE OF EQUITY IN HEALTH.46 6.1: Preamble46 6.2: The contribution of an effective HIS in promoting health equity.46 6.3: Encouraging the use of equity data at the country level .48 6.4: Research49 UNEDITED 3 6.5: Training.49 6.6: Demand for equity-sensitive data50 6.7: Broad social involvement in equity development.51 6.8: Culture of equity recommendations54 7. REFERENCES.57 ANNEX I: DEFINITION OF TERMS59 ANNEX II: CATEGORIZATION OF WHO MEMBER STATES ACCORDING TO LEVEL OF INFORMATION AVAILABILITY FOR EQUITY ANALYSIS60 ANNEX III: VITAL REGISTRATION.63 ANNEX IV SMALL-AREAS SURVEYS:64 ANNEX V: CENSUS65 ANNEX VI: HOUSEHOLD SURVEYS.66 ANNEX VII: COUNTRY-SPECIFIC INCOME AND EXPENDITURE SURVEYS.69 ANNEX VIII: COUNTRIES WITH MORE THAN ONE DHS SURVEY.70 ANNEX IX: EXAMPLES OF PROJECTS USING DIFFERENT DATA SOURCES TO IDENTIFY EQUITY CONCERNS AND TRANSLATE THEM INTO POLICY71 ANNEX X: CRITERIA FOR SELECTING INDICATORS FOR COMPARING SELECTED HEALTH/HEALTH DETERMINANT MEASURES WITH SOCIAL STRATA72 ANNEX XI: SELECTED SURVEYS AND RESOURCES.76 UNEDITED 4 1. OVERVIEW Improving the ability of health information systems (HIS) to support efforts to address health-equity challenges should be viewed as a core objective. Inequities in health, its key determinants (including access to health care) and in the consequences of ill health occur among populations as a result of unfair discrimination based upon socioeconomic and other societal factors. There is a growing recognition of ongoing and often increasing health inequities both in developed and developing countries. Despite this recognition, health information systems continue to lag behind in terms of providing the information needed to assess and address health inequities. Without empirical demonstrations of such inequities, as well as a country-level capacity to use this information for effective planning, movement towards equity is unlikely to occur. The deficit in information on inequities both between and within countries has been partly maintained by the historic structure of the HIS in which data analysis by equity- related stratifiers is usually not possible, and different data sources cannot be linked. Global leadership has also been slow to address this problem, though attention at the global level has increased in recent years. The challenge now is to determine the information needs for addressing health inequities; to shape health information systems to meet those needs; to promote sensitization to equity issues; and develop the skills required to use information for effective planning and policy-making. In addition to increasing the availability of various data sources within countries, improvements need to be made in terms of the equity-relevant information included in those sources. To assess health equity adequately, equity indicators must be constructed. This requires having both a health measure (or measure of determinant of health) as well as an equity stratifier (such as a measure of socioeconomic position, sex, age, ethnicity/race, and/or geographical position), and the ability to disaggregate information according to these stratifiers. This can be accomplished either by ensuring that appropriate equity stratifiers and health measures are available in each data source, or by creating mechanisms to link records between data sources. For example, effective linkages can be created by including a unique identifier or geographical code in a variety of data sources. Because information on these various issues is usually spread out among several data sources, the ability to link such sources is essential, assuming that the information is collected at all. At present, only 39 of 192 WHO member states have a relatively strong information system in terms of equity analysis meaning they have vital registration (90% complete) coupled with a major household survey, or the potential for effective record linkage, which would presumably support analysis according to equity stratifiers. Unsurprisingly, most of these are developed countries, and a major concern is that 90 other countries have systems with very weak equity-analysis capability, having either only one census or household survey, or no data at all. An equity-sensitive HIS could measure inequities in health outcomes; track flows of health resources in terms of access, utilization and financing; and provide a better understanding of the extent to which investments in health care contribute to improving health. It would also highlight the factors that influence health and health inequities that are outside the realm of health care for example, social and living UNEDITED 5 conditions. The impact of large societal investments and public health initiatives (including education, support to families with dependent children, and food- supplementation and other programmes) could then be more easily evaluated. Such a HIS should also be able to identify and routinely report upon indicators that can serve as key markers of the success or failure of efforts to address health inequities (1). Another key aspect of good health information systems is the ability to build in capabilities to examine various types and levels of investment in health care for different populations. For instance, it must be possible to examine patterns of health care for populations with the same and with different levels of health status to examine whether distributions are appropriate. It must also be possible to study investments in the other areas outlined above for those same populations. What is crucial is the ability to reconfigure information to highlight the distribution of health in relation to the distribution of resources directed toward maintaining or improving it. Only in this way can a health information system provide a critical perspective on the likely effectiveness of societal investments (2). Additionally, the HIS has to be designed and operated in a way that makes it easy to describe, study and relate health inequities to their determinants in such a way that policies implemented in different areas of government address these inequities and aim to decrease them. The HIS should also (through linkages with other parts of national information systems) make it possible to develop Health Inequities Impact Assessment studies to show how policies in different areas of the social and economic arena will affect existing inequities in health (for example, in terms of health status of population groups, and access, utilization, and financing of health care goods and services). Improving health equity goes beyond designing and implementing an improved HIS. Support must be given to those who advocate for health equity, and the collection, analysis and use of data disaggregated by social condition must be encouraged as an important tool for effective planning and policy-making. A centrally important issue for the development of health information systems is the development of standards to protect the privacy and confidentiality of health records. Experience suggests that it is possible to develop systems capable of answering important questions that serve the public interest, while at the same time preserving confidentiality. Without attention to this issue, the ability to obtain knowledge from the study of observational data is likely to be sharply curtailed by rising privacy concerns (3). Although there are clearly challenges ahead in effectively integrating equity-oriented data into the HIS and in supporting pro-equity policy development, there are also many strategic opportunities to improve the availability of such data. A model HIS Although there are many possible approaches to the development of a sound health information system, the framework shown in FIGURE 1 has been adopted in this paper, and is available online1. 1 www.statcan.ca/english/spsd/helthtem.htm Developed by Michael Wolfson, Statistics Canada. UNEDITED 6 FIGURE 1: Framework for a health information system Some elements of this HIS are not usually maintained by the health sector but are essential for studying the relationships between individual and collective health and the context in which they occur. The variables corresponding to the “External Milieu” and the “Health-Affecting Interventions” do not operate (and are not collected) at the same level as the variables relating to information on individuals. Even when the health-affecting interventions are “aimed” at individuals they are usually adopted as policy for a whole country or parts of it, or for special population subgroups. “Individual” data can include health status, biological factors, psychosocial factors, cognitive factors, behaviours, or risk exposures. Such data can include information on access to, and utilization of, care. It can include socioeconomic status; demographics such as age, sex and place of residence; and cultural affiliations such as race, ethnicity, and religion. However, data on individuals will be spread among a number of databases that are often maintained by different institutions. Usually data on deaths and births are maintained jointly by the health system and the civil registration system. Several of the other individual variables are registered by the health system either as part of ambulatory records and/or hospitalization records, and are therefore collected at different levels (such as the district level). Household surveys are often carried out by international organizations or contracted out. Offices of statistics may be in charge of census data, while information on the determinants of health are usually held within other ministries which often have poor levels of communication and sharing with the health sector. In many countries, few data sources exist at all, there is poor integration of data sources, and a low level of awareness of (and capacity to address) equity issues. This paper identifies the core indicators and other primary needs for building an equity- sensitive HIS, considers the current opportunities for improvement, suggests core equity stratifiers, and provides recommendations for strategically increasing the availability of equity-oriented data. Additional consideration is then given to building a culture of equity-oriented planning and decision-making. UNEDITED 7 2. HEALTH EQUITY INDICATORS 2.1: General considerations The purpose of this section is to present recommendations on the: core indicators for countries to assess health equity within their borders; actions needed to ensure that all countries (including the most resource-poor in terms of economic and information-system development) can monitor such indicators, and use the resulting information in ways that will lead towards greater equity in health at national, provincial, and (numbers and data sources permitting) district levels; and priorities for further assessment/research needed to inform future recommendations. Nongovernmental organizations (NGOs) and universities could also examine additional indicators, as should health ministries with sufficient resources. Some of the recommended indicators (for example those examining gender equity in child mortality and equity across urban/rural areas and provinces in child malnutrition) could be used to make comparisons between countries. Although indicators for such global-level monitoring of health equity also need to be addressed, this is not the primary focus of this paper. Building capacity for monitoring within-country equity would in any case contribute significantly towards the capacity needed for cross- national comparisons. Both within-country and cross-national monitoring will face the common challenge of comparability of data. The core indicators should be within the reach of all countries (including low-per- capita-income (LIC) countries) within 15 years assuming a major mobilization of global resources and political will among national and international institutions. In fact, the core indicators and many of the “next-priority” indicators are already within the reach of most high-per-capita-income (HIC) countries due to their relatively developed information systems, and many middle-per-capita-income (MIC) countries (with variable degrees of information-systems development) could achieve this either immediately or within 5 years. The focus here is on quantitative indicators that require data disaggregated by social strata because these present a major challenge to health information-systems development. There are also important qualitative indicators of health equity in countries, such as evidence of commitment to equity in legal documents (for example, the constitution) and in the major policies in all sectors affecting health; as well as other quantitative but aggregate indicators (such as % of national budget allocated to social-sector responsibilities in education, food security, housing, and health). Nevertheless, the current focus is on the challenge of ensuring the capacity to monitor quantitative measures of health disaggregated by social strata defined by socioeconomic (income, education, occupation) and ethnic group, sex, and geographical location. 2.2: Criteria and rationale for selecting health-equity indicators UNEDITED 8 The first three criteria below correspond to the 3 essential components of an equity indicator as defined in ANNEX I, namely the measure of social position, the measure of health and/or health determinants, and the method of comparison, respectively. The remaining criteria apply overall when considering core indicators of health equity. 1. An equity indicator must allow for comparison between or among different social strata “social strata” or “social groups” refer to more or less advantaged social groups not in terms of how well they do in any given health outcome but in terms of their underlying social position. Worldwide, social positioning varies in multiple dimensions (including socioeconomic; gender; ethnicity; religion; geographical location; age; disability; HIV status; and sexual orientation). Present efforts should focus on ensuring national capacity to examine health equity according to socioeconomic (occupation, education, income/assets), gender, ethnic group and geographical location, keeping the other dimensions on the agenda but addressing them only after ensuring capacity in these 4 dimensions. Socioeconomic, gender, ethnic, and geographical disadvantages are ubiquitous and powerful, and interact with each other, often in complex ways the relevant measurement issues therefore present great challenges. 2. There should be an existing data source or one within reach given sufficient political will and mobilization of global resources that provides population- based information on health and/or health determinants disaggregated by the social strata of interest and the health outcome, at least at the national (and ideally at province and district) levels. The data source must measure with acceptable quality (validity and reliability) both the health (and/or determinant of health) and the social strata information required for the indicator. 3. There should be sufficient numbers for stable comparisons the rate of occurrence of the health measure (and/or health determinant) and the numbers of people in each of the social strata must be sufficiently frequent to permit stable estimates at the national level at least (and where possible at province and district levels). Several years of data may need to be aggregated for some health measures and social groups that would otherwise not have sufficient numbers to permit stable comparisons but are so important that they must be monitored. 4. Standard scientific and ethical criteria these include validity, reliability, and acceptability of the measurement process by the population to be assessed. For policy-oriented purposes, precision will generally be less important than lack of bias. Acceptability is important both as an ethical and a scientific issue; for example, survey questions on economic resources or on health-related knowledge, attitudes, beliefs, and practices that vary in acceptability to different social strata will produce biased estimates of the differences among and between those strata. 5. The indicator should be measurable population-wide many theoretically appealing indicators are unsuitable because measurement cannot be obtained population-wide, especially in resource-constrained settings. Using such measures leads to unacceptable bias in determining the extent of equity (typically underestimating inequity because the poorest groups arent included). Facility- based data thus have a very