Marginalization through aggregation

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Cardiovascular disease is the second highest cause of mortality in Canada, eclipsed only by cancer as the highest cause of death for Canadians. When the aggregate CVD numbers are compared for women and for men, the sexes appear to have similar experiences of CVD – in 2000, 50.5% of all cardiovascular deaths in Canada were women and 49.5% were men. However, aggregation masks dramatic differences for men and for women in terms of cardiovascular disease.

Applying a sex- and gender-based analysis reveals that historically, men have had higher mortality rates from CVD, leading to the perception that CVD is a disease mainly afflicting middle-aged men. Therefore, until recently research has often only included men, leading to a male bias in our knowledge about CVD treatment and symptoms. But research has since demonstrated that the symptoms of CVD for men and women can be different, and many groups, including The Heart and Stroke Foundation of Canada, are launching education campaigns on the topic. These emerging sex-specific findings have been possible because CVD-related research has begun to include both men and women and disaggregate data by sex, with some researchers even beginning to develop sex-sensitive indicators of CVD. In other words, aggregation has been challenged, and sources of marginalization that once were invisible are now plain to see. This new line of research will improve cardiovascular care across the Canadian population.

Cardiovascular disease is only one example of how critical issues for women’s health can be lost through data aggregation, a lack of sex- and gender-based analysis, (SGBA) or not collecting data broken down by sex in the first place. There is a fundamental question underlying this issue – how can our surveillance systems collect, process, and report on the data that are important to women’s health?

Some argue that a female-specific set of health indicators (a single set of measurements that captures the status of women’s health) is needed. Others argue for making mainstream health indicators more gender-sensitive (improving how our current systems monitor issues that vary for men and women) by improving current indicators and complementing them with measures that better capture women’s and men’s health. Progress in both of these streams has been captured within Canadian Women’s Health Indicators: An Introduction, Environmental Scan, and Framework Evaluation, a report recently released by the British Columbia Centre of Excellence for Women’s Health. The report traces the evolution of women’s health indicators over the past 20 years, highlighting the recent and ongoing work of several key Canadian women’s health organizations. The full report can be viewed or downloaded  here.

Gaps in Canada’s ability to report on women’s health began to receive attention in the mid 1990s. In 1998, the Laboratory Centre for Disease Control at Health Canada noted a lack of data concerning women as a gap in their surveillance. In response, Health Canada assembled an Advisory Committee on Women’s Health Surveillance to oversee the development of women’s health surveillance in Canada. The committee was informed by the efforts of women’s health researchers working at the national, provincial, and local levels and their recommendations have helped shape future efforts. These include development of frameworks for women’s health indicators, attempts to develop sex-specific and gender-sensitive sets of indicators, and a range of other initiatives driven by Canadian women’s health researchers and other interested parties.

The POWER Study (Project for an Ontario Women’s Health Evidence-Based Report) is one such organization pushing for change. Throughout this multi-year project, the POWER team has been producing the POWER Report which examines current health information to uncover the differences between men and women and between various groups of women. Its goals are to examine gender differences on a comprehensive set of evidence-based indicators as well as differences among women associated with socioeconomic status, ethnicity, and geography. The POWER report provides an in-depth look at numerous health domains representing the leading causes of morbidity and mortality among women including: burden of illness, cancer, depression, cardiovascular disease and access to health care. Individual reports on these specific health domains provide an in-depth analysis of women’s health data, and include a strong diversity component, highlighting the health of specific subpopulations in Ontario. The POWER Study is using performance measurement and reporting on gender and socioeconomic inequities in health and health care as a tool for knowledge translation.

The Prairie Women’s Health Centre of Excellence (PWHCE) in Manitoba has also recently undertaken a series of projects that strengthen our understanding of both how a female-specific set of health indicators and a gender-sensitive set of health indicators would improve our understanding of women’s health. In 2007, the PWHCE conducted the a field test of a set of women’s health indicators proposed by the World Health Organization using Manitoba data, with the goal of assessing the feasibility of using the core set in a province of Canada. Similar field tests were undertaken in Tanzania and China. PWHCE noted that in order for the core set of indicators to properly capture the experiences of Manitoba women, data would need to be not only sex-disaggregated, but also account for diversity. Their report notes that Manitoba women have different geographical, ethnic, and socioeconomic backgrounds and that therefore indicator analysis must examine the health implications of these differences.

In 2008, building on the feasibility study of the WHO core set of women’s health indicators, PWHCE released their gender-based analysis of over 140 women’s health indicators, using a variety of sources of data for Manitoba (available at www.pwhce.ca). Whereas the feasibility study approached a core set of indicators of women’s health, the Profile of Women’s Health applied a sex- and gender-based analysis to mainstream data sources in Manitoba in order to develop a comprehensive picture of women’s health. The report was one of the first to provide an in-depth, provincial analysis; local-level results contain profound implications for service delivery, policy and research such as concrete recommendations on how to support the development of a health system that is sensitive and responsive to women’s needs.

The British Columbia Centre of Excellence for Women’s Health (BCCEWH) in Vancouver has also been a key organization in advancing the surveillance of women’s health in Canada. Since 2006, BCCEWH has partnered with women’s health organizations from across Canada in order to develop The Source, a pan-Canadian resource for women’s health surveillance. The Source  provides an SGBA, data sources, and reports on over 70 indicators of women’s health broken down into categories of health determinants, health status, and health services. The Source contains descriptions of sex-specific, gender-sensitive, and qualitative indicators, including analysis of each in terms of sex, gender, and diversity.
These initiatives, which have been influenced by and have contributed to similar international efforts, have all provided insight into how to move forward with Canadian women’s health surveillance. While the debate continues between the utility of a sex-specific set of indicators versus making standard indicator sets more gender-sensitive, a different trend has also begun to emerge. A number of organizations, including the World Health Organization, have begun to explore an equity-focused set of indicators that measure not only issues of sex and gender, but also other population characteristics that have historically led to marginalization and/or health inequity. Socio-economic status, geography, language, race, religion, and other factors all fall into this category.

The development of effective indicators to monitor marginalizing social and material forces may assist in the future advancement of women’s health surveillance. Many of the questions equity indicators seek to answer – such as how is health affected for different population groups – are the same types of questions asked in sex- and gender-based analysis. Fundamentally both techniques are concerned that summarizing data across a population can potentially mask important differences for specific subgroups. If the differences for these groups cannot be seen in the data, they will continue to be invisible in research, policy and practice. In order to develop the most effective techniques to avoid marginalizing at-risk groups, future research should explore the overlap between equity, sex, and gender, and create suggestions on how these techniques can complement and support each other.

Steve Chasey is the Manager of  Data and Surveillance at the British Columbia Centre of Excellence for Women`s Health. Ann Pederson is the Director of the British Columbia Centre of Excellence for Women`s Health.