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Redefining Policy Making Taking Action to Influence Policy Policy for Rural Women
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The Power of Citizen Engagement to Influence
In traditional policy analysis, the power and influence of key interest groups, and their elite membership, is a key explanation for policy change. Thus, for instance, the Canadian Medical Association and pharmaceutical manufacturers are typically considered key actors in conventional explanations of health policy.¹ Critics of the policy-making process suggest that interest dominated policy making creates a “democratic deficit” and erodes the legitimacy of the process. During the past decade, inspired to a considerable extent by the work of Robert Putnam, students of public policy have begun to look below organized interests, and to imagine bottom-up rather than top-down policy making. Analysts have explored the role that citizens and citizen groups can play in making policy, and have tried to “enhance citizen engagement” in an effort to democratize the policy process. Through what is often termed “deliberative dialogue” a broader range of constituents are consulted.² Women can be seen as one such constituency and some have sought to add their voices to traditional policy making through standard organizing and lobbying techniques. Other feminist/women’s activists and researchers have similarly sought ways to incorporate a diversity of women’s positions into a new kind of policy making.³ There has been considerable debate over the efficacy and sincerity of the recent governmental push for citizen engagement, but the broader effort to democratize policy making coincides and sometimes intersects with the objectives of feminist activism. 4 Projects funded by the National Network on Environments and Women’s Health (NNEWH) provide examples of policy making in which a community group can assume the role of an “institution” that lobbies from the inside out for specific changes related to women’s health. Other NNEWH projects illustrate how processes to generate knowledge from the bottom up can allow for more workable policy. In both cases the generation of new ideas and knowledge can lead interested parties and the general public to shift their expectations, behaviours and possibly even votes, and so change policy. The following account of our project, “English Canadian Attitudes to New Reproductive and Genetic Care,” provides an example of a “bottom-up” model for policy change that Diane Majury calls “the research arm of the community.” 5 Despite the high public profile of reproductive and genetic technologies, we know little about the ways in which average Canadians think about them. As a result, we don’t know how Canadians will respond to regulations and other policies that are developed, and hence whether these policies will be workable. By probing the attitudes of a wide range of Canadians, this project attempted to ground policy in experience. The data that the project generated can inform policy makers in the traditional ways, but the project also facilitated communication between interests: within focus groups, participants educated each other, thereby creating opportunities to reduce the polarization of attitudes between them. The new understanding that resulted increases the likelihood of more workable policy. The various interested parties included a general sample of Canadians, as well as specific communities of women who might turn to reproductive technology (e.g., infertile women, single women, lesbians). The project used both quantitative and qualitative methods to collect data and develop an empirical framework on which to base statements about Canadian attitudes about the use of reproductive and genetic technology. Briefly, a series of questions were added to the Winnipeg Area Study, a multi-use survey that allows researchers from a variety of disciplines to submit questions related to specific areas of interest. The sample is typically derived through a random selection of working telephone numbers in the Winnipeg area with the household as the primary sampling unit. The sample is intended to be representative of the Winnipeg population. In order to participate in the survey, respondents must be at least 18 years old, reside in the household and meet the pre-designated gender criteria randomly generated for each household. The total sample size in 1999, the year in which we added questions, was 750: 428 women and 322 men between the ages of 18 and 90. The second method for gathering data was focus groups conducted across the country. Participants in both the survey and focus groups came from diverse populations that included, among others, lesbian and minority women. We recruited participants for the focus groups with the assistance of community groups, ads and flyers, and a “nowball” (having our sources recruit additional participants). All participants were women. The groups proved extraordinarily difficult to schedule. Despite the provision of childcare and incentives, women frequently declined the opportunity to participate. Some agreed, then did not attend. Eventually, after many months of organization, groups were conducted during January and February 2000 in St. John’s, Halifax, Toronto and Vancouver. The groups included 37 women who ranged in age from 18 to 69 years. Their educational level ranged from secondary school completion to post-graduate training. Participants in both the focus groups and the survey were asked to identify the leading cause of infertility. The survey respondents were asked both closed and open-ended questions that inquired about the range of treatments, from high-tech to alternative therapies, that they might consider if they were or someone they loved was diagnosed as infertile. Focus group participants were asked the same open-ended questions. They were also asked how they made the choice and how they assessed the risk of various treatment options. The survey and focus group data were analysed to provide insight into attitudes about, and the use of, a range of infertility treatments that ranged from high-tech to alternative medicine to behavioural modification. The survey data were also analysed for gender differences. Closed and open-ended responses to the survey and transcripts of the focus group discussions suggest that many Canadians have limited knowledge about infertility, its causes, consequences and treatment. Many respondents identified genetics as the main cause of infertility. Others identified “too much sex” and “too much pop” as leading causes. In the survey population, women were more likely than men to report having been diagnosed as infertile and they were more likely than men to know someone diagnosed with infertility. In contrast to participants in the focus groups, several of whom had relied on assisted reproduction, none of the respondents to the survey reported having used in vitro fertilization, donated eggs, donated sperm or surrogacy. Most respondents to the survey voiced a preference for lowtech interventions. Women were significantly more likely than men were to consider adoption, but there were also significant gender differences in attitudes towards specific treatments. When asked about their attitudes, both men and women listed change in exercise, change in diet, and ovulation charting with timed intercourse as their preferred options and use of donated embryos and surrogacy as their least preferred. 5.5% of those between the ages of 18 and 55 reported having used alternative healing as an infertility treatment: 2.3% had relied on ovulation charting and timed intercourse, .9% undertook a change in exercise. Both the focus groups and the survey suggest that personal experience fostered greater understanding and concern and that knowing someone with infertility enhanced the participant’s awareness of the experience, available treatments and options for treatments. Among survey respondents, those who reported being infertile or knowing someone who has difficulty conceiving were significantly more likely to believe that hormonal imbalances, infectious diseases, age, delayed childbearing, wearing tight undergarments and too much exercise cause infertility. Focus groups sometimes began with participants taking extreme positions on the causes of infertility and the appropriateness of treatment. For example, infertile women were blamed for having “delayed childbearing,” and their desire for treatment was dismissed as frivolous or unnecessary. Within the focus groups, women who had personal experience of infertility tempered the discussion and began to bridge perception gaps with narratives that brought to light a range of causes and explanations. In St. John’s, for example, “Jane” spoke of her friend who had “pelvic inflammatory disease that caused a lot of scar tissue,” while “Mary” identified high costs as a barrier to adoption. In Vancouver, “Katherine,”; who had attended an adoption support group, commented on the invisibility of infertile women’s experiences. “I should know lots of people—I do know lots of people who are infertile who never talk about it. It just occurred to me.” This project has obvious relevance to the ongoing debate about the provision and regulation of assisted reproduction. Our responses to draft legislation tabled in 2000 and 2001 are informed by what we have learned:
Workable policy, that patients and practitioners would comply with rather than resist, must be built upon existing practices and acknowledge the needs of those who would be using the technology. More significantly, however, the research project itself has implications for policy making. It indicates that recruiting women who have personal experience with a particular condition or disease can be very difficult, which suggests that the voices of such women are not always well represented in the evidence that becomes the basis for policy. Second, we found that when the voices of those women are/can be incorporated, the discussion can become less polarized because the understanding and awareness of other participants is broadened and myths about issues may be dispelled. Third, focus group participants pushed the researchers to use terms that were more reflective of experience. They raised questions about the phrasing of survey questions, such as definitions of infertility and infertility treatment. They expressed unease with the commonly used definition of infertility, “the inability to conceive after a year of unprotected intercourse,” which applies almost exclusively to married women, or women in heterosexual relationships. They probed the different meanings of “infertility” to single women, lesbian women, women who were trying to conceive with a male partner, and men. They expressed concern that recurrent miscarriage is conflated with inability to conceive, and that “male infertility,” which is more difficult to diagnose, can remain hidden, is less readily treated and still places the burden of treatment on the female partner. The voices of these women, the combination of their experience and the other data gathered from the survey and the focus groups, lays the foundation for policy that is both based in and responsive to population needs. As the Royal Commission on New Reproductive Technology and its aftermath demonstrated, the policy debate over assisted reproduction is heated and polarized. Hence, efforts to move from recommendation to action have often failed. This research project suggests that focus groups can allow researchers to capture the nuances of women’s voices in ways that not only generate new knowledge, but also allow us to move beyond polarized policy alternatives. NNEWH’s approach to developing effective policy recommendations has meant engaging “the people” not only as recipients of policy, but as sources of knowledge, influence and power within focus groups as educators and peers, and without as agents of policy. NOTES For a full copy of the report contact: |
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