Breast cancer patient advocacy groups emerged in the 1990s to support and empower women with breast cancer. Women with cancer and oncologists tend to have divergent perspectives on how breast cancer prevention should be defined and what the priorities for research should be. As their American counterparts have done, breast cancer patient advocates in Canada are seeking greater participation in decision making with respect to research. To date they have had more input into research policy decisions than into the planning of specific projects. In 1993 the National Forum on Breast Cancer recommended that women with breast cancer should have more input into the research process; breast cancer patient advocates will continue to actively pursue this objective.
We assessed the impacts of a Citizens' Reference Panel on the deliberations of a provincial health technology advisory committee and its secretariat, which produce, recommendations for the use of health technologies in Ontario, Canada.
A fourteen-member citizens' reference panel was convened five times between February 2009 and May 2010 to participate in informed, facilitated discussions to inform the assessment of individual technologies and provincial health technology assessment processes more generally. Qualitative data collection methods were used to document observed and perceived impacts of the citizens' panel on the health technology assessment (HTA) process.
Panel impacts were observed for all technologies reviewed, at two different stages in the HTA process, and represented macro- (raising awareness) and micro-level (informing recommendations) impacts. These impacts were shaped by periodic opportunities for direct and brokered exchange between the Panel and the expert advisory committee to clarify roles, foster accountability, and build trust. Our findings offer new insights about one of the main considerations in the design of deliberative participatory structures-how to maintain the independence of a citizens' panel while ensuring that their input is considered at key junctures in the HTA process.
Citizens' panels can exert various impacts on the HTA process. Ensuring these types of structures include opportunities for direct exchange between citizens and experts, to clarify roles, promote accountability, and build trust will facilitate their impacts in a variety of settings.
Erratum In: Int J Technol Assess Health Care. 2013 Oct;29(4):466
In Canada, First Nations women are far less likely to breastfeed than other women. First Nations people have been subjected to massive health and social disparities and are at the lowest end of the scale on every measure of well-being. The purpose of this study is to understand the experiences, strengths, and challenges of breastfeeding for First Nations women. Central to the current research is the notion of an embodiment within indigenous women's health and, more specifically, breastfeeding perspectives.
Guided by an indigenous feminist standpoint, our research study evolved through honest discussions and is informed by relevant public health literature on breastfeeding. We collected quantitative data through a survey on demographics and feeding practices, and we conducted focus groups in three Canadian provinces (British Columbia, Manitoba, and Ontario) over a period of 1 year (2010) from 65 women in seven First Nation communities.
Three overarching themes are discussed: social factors, including perceptions of self; breastfeeding environments; and intimacy, including the contribution of fathers. The main findings are that breastfeeding is conducive to bed sharing, whereas a history of residential school attendance, physical and psychological trauma, evacuations for childbirth, and teen pregnancy are obstacles to breastfeeding. Also, fathers play a pivotal role in a woman's decision to breastfeed.
Findings from this study contribute to informing public health by reconsidering simplistic health promotion and public health policies and, instead, educating First Nations communities about the complexity of factors associated with multiple breastfeeding environments.
BACKGROUND: Healthcare priority-setting is inextricably linked to the challenge of providing publicly funded healthcare within a limited budget, which may result in difficult and potentially controversial rationing decisions. Despite priority-setting's increasing prominence in policy and academic discussion, it is still unclear what the level of understanding and acceptance of priority-setting is at different levels of health care. AIMS: The aim of this study is threefold. First we wish to explore the level of familiarity with different aspects of priority-setting among graduating medical students. Secondly, to gauge their acceptance of both established and proposed Swedish priority-setting principles. Finally to elucidate their attitudes towards healthcare rationing and the role of different actors in decision making, with a particular interest in comparing the attitudes of medical students with data from the literature examining the attitudes among primary care patients in Sweden. METHODS: A cross-sectional survey containing 14 multiple choice items about priority-setting in healthcare was distributed to the graduating medical class at Linkoöping University. The response rate was 92% (43/47). RESULTS: Less than half of respondents have encountered the notion of open priority-setting, and the majority believed it to be somewhat or very unclear. There is a high degree of awareness and agreement with the established ethical principles for priority-setting in Swedish health care; however respondents are inconsistent in their application of the cost-effectiveness principle. A larger proportion of respondents were more favourable to physicians and other health personnel being responsible for rationing decisions as opposed to politicians. CONCLUSIONS: Future discussion about priority-setting in medical education should be contextualized within an explicit and open process. There is a need to adequately clarify the role of the cost-effectiveness principle in priority-setting. Medical students seem to acknowledge the need for rationing in healthcare to a greater extent when compared with previous results from Swedish primary care patients.
The Greater Involvement of People Living with HIV/AIDS Principle (GIPA) has been a core commitment for many people involved in the community-based HIV/AIDS movement. GIPA refers to the inclusion of people living with HIV/AIDS in service delivery and decision-making processes that affect their lives. Despite its central importance to the movement, it has received little attention in the academic literature. Drawing on focus group discussions among staff members and volunteers of AIDS service organizations, activists, and community members, we explore challenges to the implementation of the GIPA principle in community-based HIV/AIDS organizations in Ontario, Canada. Our findings reveal ways in which implementing GIPA has become more complicated over recent years. Challenges relating to health, stigma and disclosure, evolving HIV/AIDS organizations, and GIPA-related tensions are identified. This paper considers our findings in light of previous research, and suggests some implications for practice.
The purpose of this study was to clarify the public health nurse's work and decision-making process in child health care during the years 1976-1986. The first study was carried out in 1976 and a subsequent one in 1986. The population of both studies consisted of public health nurses working in child health care centres. During these years many reforms were implemented in national child health care policy. According to the results of the 1986 study the public health nurses used the decision-making process, as a whole, better than in the study of 1976. The content of the health care they provided had become more varied.
We analyze Achieving Health for All: A Framework for Health Promotion with respect to children. Although the document acknowledges the health needs of children, it depicts them as passive beneficiaries of health care efforts taken by others on their behalf. We believe that, like adults, children should become active participants in all of the health-promoting activities proposed in the framework and that they can do so if taught life skills for health which emphasize decision making, coping and community participation skills.
The trend toward greater citizen participation in health care policy reform has its roots in the consumerism of the 1960s. This era witnessed the beginning of a dispersion of power in health care and an increase in the number and variety of stakeholders involved in the policy development process. Using the reform Ontario's long-term care policy as a case example, this paper offers observations about the benefits and challenges of participative policy-making. Despite the challenges and the paucity of hard evidence pointing to benefits, the author concludes that broad citizen participation in health care policy reform is a desirable goal. However, the capacity for genuine collaboration remains underdeveloped and requires more systematic refinement.