Department of Health Administration, Faculty of Medicine, Public Health Research Institute of University of Montreal (IRSPUM), University of Montreal, P.O. Box 6128, Branch Centre-ville, Montreal, Quebec H3C 3J7, Canada. firstname.lastname@example.org
There is a growing literature examining the involvement of citizens in health policymaking. While determining what form such involvement should take and who should participate is of particular interest to policymakers and researchers, the current ontological understanding of what a citizen is suffers from "lightness." This essay thus seeks to provide more depth by shedding light on the ways in which individuals define what "being" a citizen means for them and choose to embody or not such a role. Inspired by a four-year ethnographic study of a Canadian science/policy network in genetics, which integrated citizens into its operation, this paper provides four biographical sketches that portray the complexity and richness of what these individuals were "made of." We reflect on how they sought to make sense of their participation in the network by drawing on a repertoire of cultural, relational and cognitive resources and on their lived experience. Their capacity to "be" a participant and to be acknowledged as such by the others was shaped by their values and interests and by the contributions they sought to realise throughout their participation. Our discussion suggests that the quest for the "ordinary" citizen is misleading. Instead, acknowledging the sociological concreteness of citizenship and understanding how it may be embodied and exercised should be a key focus in public involvement theory and practice in health care.
To explore theatre as a public engagement tool for health-policy development.
In a justice-based democracy, engagement of a large number of citizens of diverse perspectives is required for legitimate health-policy development. However, all current strategies of citizen participation are limited in their capacity to engage, either by lack of opportunity to educate citizens prior to soliciting their opinions or lack of large numbers of citizens.
A series of 12 nested case studies was conducted, with each case study consisting of a performance of a 70-min play, specifically written to educate citizens to scientific, clinical, and psychosocial issues of adult predictive genetic testing, and to foster empathy for persons immersed therein; and a 1-h audience discussion that was taped and transcribed for qualitative analysis (modified thematic). The script was based on key informant interviews, literature review, and six script readings for key informants and communities. Audience members were recruited through conference or educational event programs, posters, newsletters, and electronic announcements, as well as newspaper advertisements and other public, community and institutional postings.
More than 1,000 citizens were engaged. The analysis indicated that audience members were engaged emotionally and cognitively in the position of the characters and the health-policy issues. Audience members' comments forwarded from personal or professional lived experience confirmed the validity of the script and promoted further emotional and cognitive engagement of other audience members. Audience members offered informed and diverse opinions on policy issues, including resource allocation, patenting of genetic tests, research funding, genetic test-based insurance discrimination, and imperative for public education. The potential for harm to key informants and audience members (and those in relationships with them) were observed, usually related to learning or offering personal information regarding their genetic risk.
As many citizens can be engaged in theatre-based policy development as surveyed through public opinion polls, and many times the number that can be engaged in strategies that educate citizens prior to soliciting their opinions, likely at a similar cost per citizen engaged.
OBJECTIVE; To determine and describe the features of Indigenous participation in an informal national Indigenous health policy network.
A questionnaire was administered during 2003-04. Through a snowball nomination process a total of 227 influential persons were identified. Of these, 173 received surveys of which 44 were returned, a return rate of 25%.
These data were analysed to detect the existence of network groups; measure the degree of group interconnectivity; and measure the characteristics of bonds between influential persons. Demographic information was used to characterise the network and its groups.
Indigenous people were integral to the network due to their high representation, their distribution throughout the 16 groups, and the interconnections between the groups. The network was demographically diverse and multiple relational variables were needed to characterise it. Indigenous and non-Indigenous people had strong ties in this network.
Social network methods made visible an informal network where Indigenous and non-Indigenous people relate in a complex socio-political environment to influence national Indigenous health policy. What is known about the topic? The participation of Indigenous people is acknowledged as important in health, but there is criticism of the lack of real opportunities for Indigenous people to participate in national Indigenous health policy processes.
The national policy in Norway have since the last part of the 1990-ies been organized in programs that erected actions including national authorities, municipalities, regional authorities and private enterprises. What have we gained by our national activities to mainstream inclusive and accessibility policy for persons with reduced capability through the principles of Universal Design? Have we made society accessible to everyone and prevented discrimination. Are the results visible? We can measure results on several sectors, inter alia public buildings, outdoor areas, central communication hubs, public transport and the occurrence plans for Universal Design in municipalities and regions. Through several programs and action plans the Norwegian government has developed a sectoral approach for including persons with disabilities in the society. The majority of ministries have participated in these plans. Local initiatives, local councils for disabled people, and later on municipalities and county administrations were supported by national authorities as complements to regulations and laws. In addition, guidelines and assisting funds were used. The main objective was to redefine the national policy, using better defined national goals and introducing Universal Design to replace accessibility as the basic tool. The mainstreaming of the accessibility policy, where Universal Design was included in relevant sectors and activities, was a crucial part of the strategy. The national policy was organized in programs that erected actions focusing on how to reach, inspire and include municipalities and regional authorities in their own struggle for Universal Design. Through the mainstream approach ministries have both earmarked economic transfers to their own agencies and used steering documents guide to these agencies how to implement Universal Design in their advisory services, in practicing laws and regulations and in their own planning and building activities.