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OBJECTIVE While there are increasing calls for public input into health research and policy, the actual obtaining of such input faces many challenges in practice. This article examines how a Canadian science/policy network in the field of genetics integrated citizens into its structure and then managed their participation. METHODS Our ethnographic case study covers a 5-year period (2003-08) and combines four data sources: observations of the network's meetings and informal activities, debriefing sessions with the network's leaders, semi-structured interviews with network members (n = 20) and document analysis. RESULTS When setting up the network, the leaders wanted to include a range of perspectives (research, clinical and policy) to increase the relevance of their research production and knowledge-transfer activities. After 2 years of operation, the network's members agreed to also include citizens who were not knowledgeable in genetics and policy issues. As neither the structure nor the dynamics of the network were modified, the citizens very soon started to feel uncomfortable with their role. They doubted the relevance of their contribution, pointing to an asymmetry in knowledge between them and the expert members. There were significant tensions in the network's governance and the citizens' concerns during the process were not fully addressed. CONCLUSION The integration of citizens into transdisciplinary networks requires recognizing and addressing the asymmetry of expertise that underpins such a collaborative endeavour. It also requires understanding that citizens may feel uncomfortable adopting the pre-defined role ascribed to them, may need a space of their own or may even withdraw if they feel being used., (© 2010 Blackwell Publishing Ltd.)

Despite a growing consensus that ethical and social values should be addressed in health technology assessment (HTA) processes, there exist a variety of methods for doing so. There is growing interest in involving citizens in policy development to ensure that decisions are legitimate, and reflect the broad social values of the public. We sought to bring these issues together by employing a participatory approach to elicit ethical and social values in HTA. Our primary objective was to elicit a set of ethical and social values from citizens that could be used to guide Ontario's HTA evidentiary review and appraisal process. A secondary objective was to explore the feasibility of using participatory approaches to elicit these values. A 14-person Citizens' Reference Panel on Health Technologies was established to provide input to the Ontario Health Technology Advisory Committee in developing its recommendations. A mixed methods approach was used where informed, deliberative discussions were combined with pre- and post-questionnaires, which assessed the relative importance of various ethical and social values as well as their stability over time. Over the course of five meetings, panel members progressed toward the identification of a set of core values -universal access, choice and quality care. These values were consistently prioritized as the core values that should be considered in the evaluation of health technologies and ensuing recommendations. Sustained and deliberative methods, like a citizens' panel, offer a promising approach for eliciting ethical and social values into HTA., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objectives: This study aims to: (1) conceptualize effective community engagement (CE) within the Local Health Integration Networks (LHIN) of Ontario, Canada, (2) develop an effective CE framework and (3) compare the CE framework to public engagement (PE) frameworks and assess their relevance to the LHIN context., Methods: We implemented "concept mapping," a participatory, mixed-methods approach, with LHIN staff. The method includes three components: (1) "Brainstorming" where participants generated statements describing effective CE; (2) "Sorting and Rating" where participants grouped statements and rated their relative importance to generate a "cluster map" and (3) "Mapping" where participants reviewed and named the clusters to yield the effective CE framework., Results: Staff generated a list of 64 statements. Participants reviewed the cluster map to generate six categories for the framework: (1) collaboration, (2) accessibility, (3) accountability, (4) education, (5) principles and (6) organizational capacity., Conclusions: The effective CE framework overlaps with PE frameworks with two caveats. First, applications of PE evaluation frameworks to the LHINs may yield incomplete results given that partnerships with service providers and organizations are integral to CE strategies. Second, "organizational capacity," largely not captured within existing frameworks, must be integrated as a feature given that emerging research identifies its importance to the successful implementation of engagement strategies., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Objectives: This study explores the factors that enhance or reduce the prospects for public involvement in the activities of health technology assessment (HTA) agencies., Methods: The analytical framework for this study is based on the work of John W. Kingdon, which provides a comprehensive synthesis of the factors influencing governments and public organizations' agenda. The study draws insights from forty-two semistructured telephone interviews with informants involved in international HTA networks and/or in HTA agencies in Canada, Denmark, and the United Kingdom., Results: This exploratory study suggests that the HTA community is moving toward greater public involvement. However, the HTA community remains cautious and ambivalent about the technical feasibility of public involvement, its acceptability to policy makers and practitioners, and its impacts on HTA agencies' resources and procedures., Conclusions: The study stresses the importance of conducting rigorous and compelling evaluations to inform HTA agencies' decision to adopt, or reject, public involvement practices.

The objective of this decision support synthesis was to identify and review published and grey literature and to conduct stakeholder interviews to (1) describe the distinguishing characteristics of clinical nurse specialist (CNS) and nurse practitioner (NP) role definitions and competencies relevant to Canadian contexts, (2) identify the key barriers and facilitators for the effective development and utilization of CNS and NP roles and (3) inform the development of evidence-based recommendations for the individual, organizational and system supports required to better integrate CNS and NP roles into the Canadian healthcare system and advance the delivery of nursing and patient care services in Canada. Four types of advanced practice nurses (APNs) were the focus: CNSs, primary healthcare nurse practitioners (PHCNPs), acute care nurse practitioners (ACNPs) and a blended CNS/NP role. We worked with a multidisciplinary, multijurisdictional advisory board that helped identify documents and key informant interviewees, develop interview questions and formulate implications from our findings. We included 468 published and unpublished English- and French-language papers in a scoping review of the literature. We conducted interviews in English and French with 62 Canadian and international key informants (APNs, healthcare administrators, policy makers, nursing regulators, educators, physicians and other team members). We conducted four focus groups with a total of 19 APNs, educators, administrators and policy makers. A multidisciplinary roundtable convened by the Canadian Health Services Research Foundation formulated evidence-informed policy and practice recommendations based on the synthesis findings. This paper forms the foundation for this special issue, which contains 10 papers summarizing different dimensions of our synthesis. Here, we summarize the synthesis methods and the recommendations formulated at the roundtable.

In the past decade, all Canadian provinces and territories have launched various team-based primary healthcare initiatives designed to improve access and continuity of care. Nurse practitioners (NPs) are increasingly becoming integral members of primary healthcare teams across the country. This paper draws on the results of a scoping review of the literature and qualitative key informant interviews conducted for a decision support synthesis about advanced practice nursing in Canada. We describe and analyze two novel approaches to NP integration designed to address the gap in patient access to primary healthcare: (1) the integration of NPs in traditional fee-for-service practices in British Columbia, and (2) the creation of NP-led clinics in Ontario. Although fee-for-service remuneration has been a barrier to collaborative practice, the integration of government-salaried NPs into fee-for-service practices in British Columbia has enabled the creation of inter-professional teams, and based on early evaluation findings, has increased patient access to care and patient and provider satisfaction. NP-led clinics are designed to provide inter-professional care in communities with high numbers of patients who do not have a regular primary healthcare provider. Given the shortage of physicians in communities where these clinics are being introduced, the ratio of physicians to NPs is lower than in other primary healthcare delivery models, and physicians function in more of a consulting role. Initial evaluation of the first of 26 NP-led clinics indicates increased access to care and high levels of patient and provider satisfaction. Implementing a creative mosaic of collaborative primary healthcare models that are responsive to patient needs challenges traditional assumptions about professional roles and responsibilities. To address this challenge, we endorse a recommendation that governments establish a mechanism to bring together both physician and non-physician primary healthcare providers to advise on primary healthcare policy development and implementation.

Although advanced practice nurses (APNs) have existed in Canada for over 40 years and there is abundant evidence of their safety and effectiveness, their full integration into our healthcare system has not been fully realized. For this paper, we drew on pertinent sections of a scoping review of the Canadian literature from 1990 onward and interviews or focus groups with 81 key informants conducted for a decision support synthesis on advanced practice nursing to identify the factors that enable role development and implementation across the three types of APNs: clinical nurse specialists, primary healthcare nurse practitioners and acute care nurse practitioners. For development of advanced practice nursing roles, many of the enabling factors occur at the federal/provincial/territorial (F/P/T) level. They include utilization of a pan-Canadian approach, provision of high-quality education, and development of appropriate legislative and regulatory mechanisms. Systematic planning to guide role development is needed at both the F/P/T and organizational levels. For implementation of advanced practice nursing roles, some of the enabling factors require action at the F/P/T level. They include recruitment and retention, role funding, intra-professional relations between clinical nurse specialists and nurse practitioners, public awareness, national leadership support and role evaluation. Factors requiring action at the level of the organization include role clarity, healthcare setting support, implementation of all role components and continuing education. Finally, inter-professional relations require action at both the F/P/T and organizational levels. A multidisciplinary roundtable formulated policy and practice recommendations based on the synthesis findings, and these are summarized in this paper.

Posttraumatic stress disorder (PTSD) is more prevalent in perinatal than general samples of women (6-8% vs. 4-5%). To explore potential causes, we examined the symptom profiles of women belonging to two separate samples: a perinatal clinic sample (n = 1581) and a subsample of women in a similar age range from the U. S. National Women's Study (NWS) (n = 2000). Within the perinatal sample, risk ratios were higher for all 17 PTSD symptoms among women with current PTSD compared with unaffected women, suggesting that higher rates are not likely due to measurement error. The younger age and greater social disadvantage in the perinatal clinic sample contributed only a small proportion of variance in symptom levels compared with extent of trauma exposure and pre-existing PTSD. Compared with the national study sample's symptom profile, the perinatal sample had higher rates of occurrence of five symptoms: detachment, loss of interest, anger and irritability, trouble sleeping, and nightmares. This analysis confirms that PTSD rates are higher in perinatal samples, which is likely due to exacerbation of pre-existing PTSD among women of a younger age and greater social disadvantage. Further elucidation is warranted, including identifying triggers and determining if there are needs for pregnancy-specific interventions.

There have been calls in recent years for greater public involvement in health technology assessment (HTA). Yet the concept of public involvement is poorly articulated and little attention has been paid to the context of HTA agencies. This article investigates how public involvement is conceptualized in the HTA agency environment. Using qualitative concept analysis methods, we reviewed the HTA literature and the websites of HTA agencies and conducted semi-structured interviews with informants in Canada, Denmark, and the United Kingdom. Our analysis reveals that HTA agencies' role as bridges or boundary organizations situated at the frontier of research and policymaking causes the agencies to struggle with the idea of public involvement. The HTA community is concerned with conceptualizing public involvement in such a way as to meet scientific and methodological standards without neglecting its responsibilities to healthcare policymakers. We offer a conceptual tool for analyzing the nature of public involvement across agencies, characterizing different domains, levels of involvement, and types of publics., (Copyright (c) 2010 Elsevier Ltd. All rights reserved.)

The spliceosome is a complex small nuclear RNA (snRNA)-protein machine that removes introns from pre-mRNAs via two successive phosphoryl transfer reactions. The chemical steps are isoenergetic, yet splicing requires at least eight RNA-dependent ATPases responsible for substantial conformational rearrangements. To comprehensively monitor pre-mRNA conformational dynamics, we developed a strategy for single-molecule FRET (smFRET) that uses a small, efficiently spliced yeast pre-mRNA, Ubc4, in which donor and acceptor fluorophores are placed in the exons adjacent to the 5' and 3' splice sites. During splicing in vitro, we observed a multitude of generally reversible time- and ATP-dependent conformational transitions of individual pre-mRNAs. The conformational dynamics of branchpoint and 3'-splice site mutants differ from one another and from wild type. Because all transitions are reversible, spliceosome assembly appears to be occurring close to thermal equilibrium.

The spliceosome is a complex small nuclear (sn)RNA-protein machine that removes introns from pre-mRNAs via two successive phosphoryl transfer reactions. For each splicing event, the spliceosome is assembled de novo on a pre-mRNA substrate and a complex series of assembly steps leads to the active conformation. To comprehensively monitor pre-mRNA conformational dynamics during spliceosome assembly, we developed a strategy for single-molecule FRET (smFRET) that utilizes a small, efficiently spliced yeast pre-mRNA, Ubc4, in which donor and acceptor fluorophores are placed in the exons adjacent to the 5' and 3' splice sites. In this chapter, we describe the identification of Ubc4 pre-mRNA that is efficiently spliced in vitro and the methods we have developed for the chemical synthesis of fluorescent Ubc4 pre-mRNA for smFRET., (Copyright 2010 Elsevier Inc. All rights reserved.)

Objective: While much literature has debated public engagement in health care decision-making, there is no consensus on when public engagement should be sought and how it should be obtained. We conducted a scoping review to examine public engagement in one specific area: priority setting and resource allocation., Method: The review drew upon a broad range of health and non-health literature in an attempt to elicit what is known and not known on this topic, and through this to outline any guidance to assist decision-makers and identify where efforts for future research should be directed., Results: Governments appear to recognize benefits in consulting multiple publics using a range of methods, though more traditional approaches to engagement continue to predominate. There appears to be growing interest in deliberative approaches to public engagement, which are more commonly on-going rather than one-off and more apt to involve face-to-face contact. However, formal evaluation of public engagement efforts is rare. Also absent is any real effort to demonstrate how public views might be integrated with other decision inputs when allocating social resources., Conclusion: While some strands can be taken to inform current priority setting activity, this scoping review identified many gaps and highlights numerous areas for further research.

Objectives: We used a qualitative empirical study of Canadians' values toward their health system to develop more meaningful conceptualizations of trust and health systems that can inform the pursuit of more trustworthy health systems., Methods: We convened nine focus groups in three Canadian cities in 2002 and 2004 in conjunction with a national public opinion telephone survey of Canadians' attitudes and values toward their health system. Health system trust emerged as a significant theme in focus group discussions and was investigated using a modified grounded theory approach., Findings: Respondents construct cleavages and alliances to position themselves in relation to different features of the trusted health system. The health system and Canadian Medicare are identified sources of trust just as are individual health care providers. Core to the trust relationship is the experience of vulnerability which provides the impetus for placing trust (in providers, governments and health systems) or seeds distrust, mistrust and resilience in the same., Conclusions: We offer a more robust conceptualization of what it means to trust a health system. Policy maker efforts to intervene to restore lost trust could usefully be informed by these findings.

In May 2005, preliminary trial results pronouncing the effectiveness of Herceptin (trastuzumab) for treatment of early-stage breast cancer were disseminated at a high-profile scientific meeting. Herceptin was subsequently approved for use in the public healthcare systems of Canada and the United Kingdom, although the differences between the two decision timelines were stark. The authors compared UK and Canadian newspaper coverage of the Herceptin story to assess how it may have been "hyped" in each country. They analyzed a diverse sample of newspapers and coded clippings for reporters' framing of the drug's efficacy, costs and funding approval process. Canadian news coverage preceded formal publication of the trial results, while UK coverage mirrored major national events. Reporters in both countries used predominantly individualistic perspectives and framed Herceptin's efficacy in salutary terms. Framing of costs was more neutral in Canadian than in UK newspapers. Funding approval framing focused on inequitable access in the UK and timeliness in Canada. News coverage of drug access stories varies across jurisdictions in terms of intensity and some aspects of framing. Such variations likely reflect different journalistic practices and dominant political rhetoric. Greater attention should be given to the role that news coverage of drug access plays in shaping public opinion and policy action, especially when this coverage precedes scientific debate., (Copyright © 2009 Longwoods Publishing.)

Background: The role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues., Methods: We conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly., Results: Broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research., Conclusion: Because no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.

Objectives: This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research., Design: The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada., Measurements: We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data., Results: Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income., Conclusions: Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.

Like many jurisdictions, mental health policy-making in Ontario, Canada, has a long history of frustrated attempts to move from a hospital and physician-based tradition to a coordinated system with greater emphasis on community-based mental health care. This study examines policy legacies associated with the introduction of psychiatric hospitals in the 1850s and of public health insurance (medicare) in the 1960s in Ontario; and their effect on subsequent mental health reform initiatives using a qualitative case study approach. Following Pierson (1993) we capture the resource/incentive and interpretive effects of prior policies on three groups of actors: government elites, interests, and mass publics. Data are drawn from academic and policy literature, and key informant interviews. The findings suggest that psychiatric hospital policy produced important policy legacies which were reinforced by the establishment of Canadian medicare. These legacies explain the traditional difficulty in achieving mental health reform, but are less helpful in explaining recent promising developments that support community-based care. Current reform of the Ontario health system presents an opportunity to overcome several of these legacies. Analysis of policy legacies in other countries which had an asylum tradition may help to explain the similarities and differences in their subsequent paths of mental health reform.

Those making health care coverage decisions rely on health technology assessment (HTA) for crucial technical information. But coverage decision-making, and the HTA that informs it, are also inherently political. They involve the values and judgments of a range of stakeholders as well as the public. Moreover, governments are politically accountable for their resource allocation decisions. Canadian policy makers are at an early stage in the design of legitimate mechanisms for the public to contribute to, and to be apprised of, HTA and coverage decisions. As they consider the options, questions arise about whom to involve (e.g., which publics), how to engage them (e.g., through what public involvement or accountability mechanisms), and for what purpose (e.g., to inform the public of decisions and their rationales, or to have the public directly affect those decisions). Often key concepts, such as the difference between public accountability and public participation, are not well articulated or distinguished in these debates. Guidance is needed regarding both rationales and methods for involving the public in HTA and technology coverage decisions. We offer a framework that clearly distinguishes specific roles for the public, and relates them to several layers of policy analysis and policy making where 'the public' may engage in different tasks. The framework offers a menu of choices for policy makers contemplating changes to public involvement, as well as a model that can be used to characterize and analyze different approaches across jurisdictions.

To resolve tensions among competing sources of evidence and public expectations, health-care managers and policy makers are turning more than ever to involve the public in a wide range of decisions. Yet efforts to use research evidence to inform public involvement decisions are hampered by an absence of rigorous public participation evaluation research. In particular, greater rigour in exploring the roles played by different contextual variables--such as characteristics of the issue of interest, the culture of the sponsoring organization and attributes of the decision being made--is needed. Using a comparative quasi-experimental design, we assessed the performance of a generic public participation method implemented in 5 Canadian regionalized health settings between 2001 and 2004. Participant and decision-maker perspectives were assessed and, through direct observation, the roles exerted by contextual variables over the public involvement processes were documented and analysed. Our findings demonstrate that a generic public participation method can be implemented in a variety of contexts and with considerable success. Context exerts fostering and inhibiting influences that contribute to more (or less) successful implementation. Public participation practitioners are encouraged to pay careful attention to the types of issues and decisions for which they are seeking public input. Sufficient organizational resources and commitment to the goals of the public participation process are also required. Attention to these contextual attributes and their influence on the design and outcomes of public participation processes is as important as choosing the "right" public participation mechanism.

The objective of this study was to explore the presence of ideological barriers to addressing local health inequalities in Hamilton, Ontario, Canada. A survey of active citizens revealed low levels of awareness of the social determinants of health (SDOH) framework, and some incongruence between understanding and attitudes towards the SDOH. Support for addressing health inequalities was associated with awareness of the SDOH framework, liberal value-systems, and a cluster of socio-demographic characteristics. Liberal leaning participants were also more politically active than their conservative counterparts. Ideological barriers included lack of SDOH awareness, narrow understandings of the relative influences of the SDOH, resistance to de-prioritizing healthcare, and conservative values. Advancement of a SDOH policy agenda should incorporate wider dissemination efforts to citizens and local service providers to increase support for this framework, and utilization of existing support and political engagement from liberal-leaning demographics.

News media effects on their audiences are complex. Four commonly cited effects are: informing audiences; agenda-setting; framing; and persuading. The release in autumn 2002 of two reports on options for reforming Canada's healthcare system attracted widespread media attention. We explored the potential for each of the four media effects by examining Canadian newspaper representation of this healthcare policy debate. Clippings were gathered from regional and national newspapers. Two data collection methodologies were employed: the first involved two staggered "constructed weeks" designed to capture thematic news framing styles; the second collected "intensive" or episodic coverage immediately following the report releases. Health reform articles with a financing and/or delivery focus were included. Using a codebook, articles were coded to track article characteristics, tone, healthcare sector and reform themes, and key actors. A greater quantity of episodic (n=341 clippings) versus thematic coverage (n=77) was documented. Coverage type did not vary significantly by newspaper, reporting source (e.g., staff reporter versus staff editorialist) or article type (e.g., news versus letter). Thematic articles were significantly shorter in length compared to episodic clippings. Episodic coverage tended to have a positive tone, while thematic coverage ranged in tone. Most coverage was general in scope. Sector-specific coverage favoured physician and hospital care--the two providers accorded privileged financing arrangements under Canada's universal, provincially administered health-insurance plans. Coverage of healthcare financing arrangements favoured broad discussions of publicly financed healthcare, federal-provincial governmental relations, and the Canada Health Act that governs provincial plans. Governmental actors and the political institutions that they represent were the dominant actors. Professional associations were also visible, but played a less dominant role. Given its non-specific scope, it is unclear how informative this coverage was. The large quantity and short duration of the episodic coverage, and the preponderance of governmental actors, suggests these newspapers acted as conduits for the policy agenda. Differences in framing styles were observed by coverage type, newspaper, reporting source, article length and type of article. Finally, the dominance of governmental actors provided these actors with numerous opportunities to persuade the public.

Aims: This paper examines differences between early- and late-onset injection drug users (12-16 years versus 17-24 years) in terms of the antecedents and circumstances of first injection., Design: Cross-sectional retrospective design, using logistic regression. Setting Australia: Sydney, Brisbane, rural New South Wales., Participants: A total of 336 injection drug users aged 16-25 years at the time of interview., Measurements: Independent variables included family injection drug use, homelessness and other demographic variables, drugs used prior to the first injection, length of pre-injection drug career, behaviours at time of first injection (e.g. drug injected, reasons/motives for the first injection, risk behaviours)., Findings: Early-onset injection was associated independently with: having a family who injected drugs, having left school early, an unreliable source of income, a short pre-injection drug career, planning of the first injection, reliance on others for administration of the first injection and denial that experimentation was the motive for the first injection. In bivariate analysis, early-onset injection was associated further with: homelessness, being an Indigenous Australian, omission of use of certain pre-injection drugs, group presence at first injection, reliance on others for acquisition of the first needle and syringe and having injected the first time because an injection was offered., Conclusions: The research shows that early-onset, compared with late-onset injectors, are more likely to have an immediate family who inject drugs and other problematic beginnings in early life. They have an accelerated transition to injection, and differences in autonomy and motivation at first injection. These characteristics may make them more vulnerable to risk taking.

This paper examines factors associated with feeling suicidal in a large sample of urban men in Sydney and Melbourne, aged 18-50, including heterosexual, gay and bisexual men, HIV antibody positive and HIV antibody negative. As in previous research, sexuality (being homosexual or bisexual) was found to be a major predictor of suicidality. The research went some way towards explaining the close relationship between feeling suicidal and sexual orientation. Sexuality interacts with feeling bad in that, once men feel moderately bad/depressed, they are more likely to feel suicidal if they are homosexual or bisexual than if they are heterosexual. In addition, the research found that experience of verbal abuse and physical assault (harassment) increased feeling suicidal for both heterosexual and gay/bisexual men, not just for homosexual men as suggested by previous research, and that social isolation in the form of living alone is a further risk factor. Seeking counseling help and taking sexual risks were also independently associated with feeling suicidal. These actions may result from feeling suicidal rather than the reverse, and their association with feeling suicidal warrants further research. Many of the 46 independent variables examined in the research, including HIV antibody status and closeness to the HIV/ AIDS epidemic, were related to feeling suicidal only through their association with being gay/bisexual. Celibacy and general risk taking were not related to feeling suicidal in this study.

Many researchers hope to see the best available research evidence used in policy-making to address important public problems. However, policy often appears to be based on anything but the research evidence, as the problem of conduct disorder (or severe antisocial behaviour in children) shows. In Canada, few children receive effective prevention or treatment programs, and incarceration is overused, despite evidence that it is ineffective and potentially harmful. Using the example of conduct disorder, we investigated why policy-making has not reflected the research evidence, examining research use in the context of competing influences on the policy process. Qualitative methods were used to analyze data from interviews with thirty-two politicians and senior civil servants. Our allegiance to rationality wavered as we listened to policy-makers who contended with the inherent ambiguity in the policy process. They told us that they managed institutional constraints including fragmentation across levels and sectors of government, and the long-term effects of fiscal restraint. They also reconciled the competing interests of stakeholders' priorities, the public's response to negative events involving children and the media's role in shaping this response. Ideas about youth violence were morally charged, but policy-makers remained committed to improving children's lives. Day-to-day, policy-makers obtained most of their information internally and informally. Research evidence was valued and used, but as just one source of ideas and information among many. In this environment of ambiguity, creative civil servants formed partnerships with trusted researchers in order to change policy. Our findings suggest that the use of research evidence in policy-making could be enhanced if researchers learned about the competing influences on the policy process, formed research-policy partnerships, challenged the incentives within research institutions, and engaged in public debates about important problems, such as child antisocial behaviour.

Objective: To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co-ordination., Context: In 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks, the architects of the new provincial system hoped to broaden participation in decision making and to enhance the responsiveness of decisions to communities., Research Approach: Through a qualitative, multiple case study approach we evaluated the processes of involving patients in network development. In-depth, semi-structured interviews and document analysis were complemented by observations of provincial meetings, regional council and network meetings., Results: The network development processes in the three case study regions reveal a significant gap between intentions to involve patients in health planning and their actual involvement. This gap can be explained by: (i) a lack of clear direction regarding networks and patient participation in these networks; (ii) the dominance of regional cancer centres in network planning activities; and, (iii) the emergence of competing provincial priorities., Discussion: These three trends expose the complexity of the notion of public participation and how it is embedded in social and political contexts. The failed attempt at involving patients in health planning efforts is the result of benign neglect of public participation intents and the social and political contexts in which public and patient participation is meant to occur.

For health researchers who seek more research use in policy making to improve health and healthcare, working with the news media may represent an opportunity, given the media's pivotal role in public policy agenda-setting. Much literature on science and health journalism assumes a normative stance, focusing on improving the accuracy of news coverage. In this study, we investigated journalists' perspectives and experiences. We were particularly interested in learning how health researchers could work constructively with journalists as a means to increase research use in policy making. Qualitative methods were used to conduct and analyze interviews with experienced newspaper journalists across Canada, with children's mental health as a content example. In response, study participants emphasized journalistic processes more than the content of news coverage, whether children's mental health or other topics. Instead, they focused on what they thought researchers needed to know about journalists' roles, practices and views on working with researchers. Newspaper journalists balance business and social responsibilities according to their respective roles as editors, columnists and reporters. In practice, journalists must ensure newsworthiness, relevance to readers and access to sources in a context of daily deadlines. As generalists, journalists rely on researchers to be expert interpreters, although they find many researchers unavailable or unable to communicate with public audiences. While journalists are skeptical about such common organizational communications tools as news releases, they welcome the uncommon contributions of those researchers who cultivate relationships and invest time to synthesize and communicate research evidence on an ongoing basis. Some appealed for more researchers to join them in participating in public conversations. We conclude that there are opportunities for policy-oriented health researchers to work constructively with newspaper journalists--by appreciating journalists' perspectives and by taking seriously some of their suggestions for engaging in public conversations--and that such engagement can be a means to increase the use of research evidence in policy making and thereby improve health and healthcare.

The purpose of this study was to determine the incidence of fungal infections in pediatric hematology and oncology (PHO) patients and to describe variations regarding site of infection, organisms, and mortality. The records of 1,052 patients presenting to the UCLA PHO service with various malignancies from 1991 to 2001 were retrospectively reviewed. No patient received invasive antifungal prophylaxis. Transplant patients were excluded. The 11-year incidence of fungal infections in this pediatric oncology cohort was 4.9%. There was a linear increase in the incidence of fungal infections from 2.9% to 7.8% between 1996 and 2001 (P = 0.001). Patients with acute leukemia represented 36% of the population but had a disproportionate incidence (67%) of fungal infections. Adolescents had twice the expected incidence of infection (P < 0.0001). Overall, Candida sp. was the major pathogen. Over time, a trend of fewer infections caused by Candida and more due to Aspergillus was noted. Blood-borne infections decreased over time, while those in the urinary and respiratory tracts increased (P = 0.04). Sixty-two percent of infections occurred in neutropenic patients. PHO patients had an overall mortality of 21%, but those with fungal infections experienced a 2.6-fold higher mortality that was not attributable to infections alone. Empiric antifungal therapy had no effect on mortality rates. Concurrent nonfungal infections did not increase mortality rates. The incidence of fungal infections increased over time, possibly as a result of advances in antibacterial and chemotherapeutic regimens. Adolescents and patients with leukemia were especially at risk. Fungal infections are a poor prognostic factor, independent of fungal-related mortality. New diagnostic methods allowing for early detection and treatment as well as more effective therapies are needed.

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital.

Introduction: Health policy decision-makers are grappling with increasingly complex and ethically controversial decisions at a time when citizens are demanding more involvement in these decision processes., Objectives: To assess and revise a set of guiding principles for the design of public involvement processes generated from a synthesis of public participation design and evaluation frameworks that can be used to inform the design and evaluation of future public participation processes in the health sector., Methods: Six focus groups held in five Canadian provinces comprising citizens with considerable experience of public participation processes., Results and Discussion: Our findings suggest that citizen participants are highly critical of, and discerning about,their public participation experiences. Yet, they are optimistic and determined to contribute in meaningful ways to future public policy processes. They are clear about where improvements are needed and give top priority to what information is shared, and how, among participants and decision-makers. The views of experienced citizens mapped well onto most of the prior principles of public involvement with a few modifications. First, participants gave greater emphasis to the content and balance of information for the purposes of building trust and credibility between citizens and decision-makers. Second, participants viewed themselves, as well as decision-makers, as sources of information to be shared through the consultation process. Finally, participants stressed the importance of getting the information and communication principles right over addressing all other principles.

Elucidation of the three-dimensional (3D) structures of the two sequential active sites in spliceosomes is essential for understanding the mechanism of premessenger RNA splicing. The mechanism is predicted to be catalyzed by the small nuclear RNA (snRNA) components of spliceosomes. To obtain new tertiary constraints between the RNA components, we produced and mapped crosslinks between U6 snRNA and the proximal RNAs of active yeast spliceosomes ("yeast" in this report is Saccharomyces cerevisiae). Thus, specific sites in U6, when substituted with a photoreactive 4-thiouridine or 5-iodouridine, produced spliceosome-dependent crosslinks to U2 snRNA, or in one case, to the pre-mRNA substrate. One set of U2-U6 crosslinks formed before the Prp2p-dependent step of spliceosome assembly, whereas another set formed during or after this step but before the first chemical step of splicing. This latter set of crosslinks formed across U2-U6 helix I. Importantly, this set provides new tertiary constraints for developing 3D models of fully assembled yeast spliceosomes, which are poised for the first chemical step of splicing.

One of the classic characteristics of the human stress response is the wide inter-individual variation. Although there is much current interest in the genetic and environmental contributions to these differences, studies on human subject have been sparse and characterised by methodological problems. The major factor that is rarely taken into account is the intrinsic rhythmicity of hypothalamo-pituitary-adrenal activity, not simply the classic diurnal variation but also the endogenous pulsatility which is similar to, but much less well recognized than, the rhythms found within the reproductive and growth hormone axes. In this review we propose some novel ideas relating to the importance of pulsatility both for the design of human stress-response studies and for their interpretation as well as implications for our understanding of disease.

In 1996, a newly elected government in the Province of Ontario, Canada, introduced a managed competition environment into the home care sector through the establishment of a competitive contracting process for home care services. Through 65 in-depth, semi-structured interviews conducted between November 1999 and January 2001, we trace the implementation of this competitive contracting policy within Ontario's newly established managed community care environment and assess the effects of competitive contracting against two sets of goals: (1). quality of care goals that consider continuity of care of paramount importance in the provision of home care; and (2). the managed competition goal of increased efficiency. In assessing the implementation of this policy against these goals, we highlight the conflicts that can arise in pursuing different policy goals in response to different formulations of the policy problem that underpin them. We map stakeholder experiences with the competitive contracting policy onto relevant contracting and managed competition literatures. When measured against the goals of quality of care and efficiency, the findings presented here offer a mixed review of the experiences to date with the competitive contracting process introduced in Ontario's home care sector and suggest improvements for managing future competitive contracting processes.

In 2002 Canadians were less anxious about the state of their health care system than they were a few years earlier, when perceptions peaked that the system needed major reform. They expressed strong support in 2002 for maintaining the status quo on health care financing (that is, no user fees and no two-tier care) within the traditional domains of physician and hospital care. But they appeared more receptive to two-tier care and for-profit delivery for the newer and rapidly expanding domains of home care and high-tech care.

Despite widespread recognition of the importance of values, decision makers and stakeholders in health policy appear to disagree fundamentally over what 'values' essentially are. Hidden dissent about the nature of values can confuse policy deliberations. This study investigates empirically the following two questions: (1) what sorts of entities do Canadian health reformers typically call 'values'? and; (2) how do Canadian health reformers use the idea of values in health reform rhetoric? We conducted a qualitative, interpretive analysis of 36 Canadian health reform documents published during the period 1990-1999. The values raised in Canadian health reform rhetoric vary widely not only in topic (e.g. health states, health services, equity, economic viability, etc.) but also in substance (e.g. physical entities, goals, principles, attitudes, etc.). We review the diversity of concepts underlying 'values talk' in health policy, and discuss implications for policy analysis and future research.

An overview is presented of the rationale, design, and analysis plan for the WMH-CIDI clinical calibration studies. As no clinical gold standard assessment is available for the DSM-IV disorders assessed in the WMH-CIDI, we adopted the goal of calibration rather than validation; that is, we asked whether WMH-CIDI diagnoses are 'consistent' with diagnoses based on a state-of-the-art clinical research diagnostic interview (SCID; Structured Clinical Interview for DSM-IV) rather than whether they are 'correct'. Consistency is evaluated both at the aggregate level (consistency of WMH-CIDI and SCID prevalence estimates) and at the individual level (consistency of WMH-CIDI and SCID diagnostic classifications). Although conventional statistics (sensitivity, specificity, Cohen's kappa) are used to describe diagnostic consistency, an argument is made for considering the area under the receiver operator curve (AUC) to be a more useful general-purpose measure of consistency. In addition, more detailed analyses are used to evaluate consistency on a substantive level. These analyses begin by estimating prediction equations in a clinical calibration subsample, with WMH-CIDI symptom-level data used to predict SCID diagnoses, and using the coefficients from these equations to assign predicted probabilities of SCID diagnoses to each respondent in the remainder of the sample. Substantive analyses then investigate whether estimates of prevalence and associations when based on WMH-CIDI diagnoses are consistent with those based on predicted SCID diagnoses. Multiple imputation is used to adjust estimated standard errors for the imprecision introduced by SCID diagnoses being imputed under a model rather than measured directly. A brief illustration of this approach is presented in comparing the precision of SCID and predicted SCID estimates of prevalence and correlates under varying sample designs.

In Canada, home care is growing rapidly. Each province takes a somewhat different approach to its delivery. Ontario uses a competitive bidding model to award contracts to community agencies that bid for service delivery rights. Contracts are to be awarded based on quality and price. However, the attributes thought to contribute to high quality, such as continuity of care, are not clearly defined and are not measured. We sought to identify factors that were important to experiencing continuity of care in home care. We interviewed home care clients and their caregivers, workers in the home care system (nursing and homemaking service providers, case managers) and physicians whose patients use home care. During in-depth interviews with these key stakeholders, they described the conditions that led to continuity of care in home care. Service providers and case managers were also asked about the types of clients who need a high level of care continuity. Care that is experienced as running smoothly, that responds to clients' needs and requires no special effort for clients to maintain, was seen as having continuity. The attributes of care experienced as facilitating continuity could be grouped under two dimensions of care-managing care (care planning, monitoring and review; and care coordination) and direct service provision (uninterrupted service delivery; consistent, appropriate knowledge and skills; ongoing accurate observation; trusting relationship between service provider and client/caregiver; rapport among team members; and consistent timing). Different stakeholders emphasized different attributes of care as most important to continuity. Clients included consistency of timing of service delivery while rarely mentioning care management issues. They emphasized the importance of consistent knowledge and skills in the workers and trusting relationships as important to experiencing care continuity. The description of attributes of continuity of home care that emerged from this study is compared to definitions found in the nursing, mental health and primary care literature.

Stable addition of U2 small nuclear ribonucleoprotein (snRNP) to form the prespliceosome is the first ATP-dependent step in splicing, and it requires the DEXD/H box ATPase Prp5p. However, prespliceosome formation occurs without ATP in extracts lacking the U2 snRNP protein Cus2p. Here we show that Prp5p is required for the ATP-independent prespliceosome assembly that occurs in the absence of Cus2p. Addition of recombinant Cus2p can restore the ATP dependence of prespliceosome assembly, but only if it is added before Prp5p. Prp5p with an altered ATP-binding domain (Prp5-GNTp) can support growth in vivo, but only in a cus2 deletion strain, mirroring the in vitro results. Other Prp5 ATP-binding domain substitutions are lethal, even in the cus2 deletion strain, but can be suppressed by U2 small nuclear RNA mutations that hyperstabilize U2 stem IIa. We infer that the presence of Cus2p and stem IIa-destabilized forms of U2 small nuclear RNA places high demands on the ATP-driven function of Prp5p. Because Prp5p is not dispensable in vitro even in the absence of ATP, we propose that the core Prp5p function in bringing U2 to the branchpoint is not directly ATP-dependent. The positive role of Cus2p in rescuing mutant U2 can be reconciled with its antagonistic effect on Prp5 function in a model whereby Cus2p first helps Prp5p to activate the U2 snRNP for prespliceosome formation but then is displaced by Prp5p before or during the stabilization of U2 at the branchpoint.

How to involve the public in setting health and health care priorities is a constant challenge for health system decisions. Policy maker interest in involving the public in increasingly complex and value-laden priority setting processes has led to the use of deliberative public involvement methods designed to promote discussion and debate among participants with the objective of obtaining more informed and consensual views. These methods have not been evaluated rigorously using controlled designs with pre- and post-test measurements. We examined, using a controlled design, the effects of introducing different opportunities for deliberation into a process for obtaining public input into a community health goals priority setting process. Our findings indicate that deliberation does make a difference to participant views. As more deliberation is introduced, participant views may be more amenable to change. Deliberation also offers the potential for views to become more rather than less entrenched. While we are beginning to understand the difference deliberation makes to participant views, we are still at an early stage in understanding the process through which these differences come about and what difference deliberation makes to broader outcomes such as civic competence, civic engagement and health policy decisions.

A common thread weaving through the current public participation debate is the need for new approaches that emphasize two-way interaction between decision makers and the public as well as deliberation among participants. Increasingly complex decision making processes require a more informed citizenry that has weighed the evidence on the issue, discussed and debated potential decision options and arrived at a mutually agreed upon decision or at least one by which all parties can abide. We explore the recent fascination with deliberative methods for public involvement first by examining their origins within democratic theory, and then by focusing on the experiences with deliberative methods within the health sector. In doing so, we answer the following questions "What are deliberative methods and why have they become so popular? What are their potential contributions to the health sector?" We use this critical review of the literature as the basis for developing general principles that can be used to guide the design and evaluation of public involvement processes for the health-care sector in particular.

Five questions--What should be transferred to decision makers? To whom should it be transferred? By whom? How? With what effect?--provide an organizing framework for a knowledge transfer strategy. Opportunities for improving how research organizations transfer research knowledge can be found in the differences between the answers suggested by our understanding of the research literature and those provided by research-organization directors asked to describe what they do. In Canada, these opportunities include developing actionable messages for decision makers (only 30 percent of research organizations frequently or always do this), developing knowledge-uptake skills in target audiences and knowledge-transfer skills in research organizations (only 20 to 22 percent frequently or always do this), and evaluating the impact of knowledge-transfer activities (only 8 to 12 percent frequently or always conduct an evaluation). Research funders can help research organizations take advantage of these opportunities.

Objectives: The literature on participation in priority-setting has three key gaps: it focuses on techniques for obtaining public input into priority-setting that are consultative mechanisms and do not involve the public directly in decision-making; it focuses primarily on the public's role in priority-setting, not on all potential participants; and the range of roles that various participants play in a group making priority decisions has not been described. To begin addressing these gaps, we interviewed individuals who participated on two priority-setting committees to identify key insights from participants about participation., Methods: A qualitative study consisting of interviews with decision-makers, including patients and members of the public., Results: Members of the public can contribute directly to important aspects of priority-setting. The participants described six specific priority-setting roles: committee chair, administrator, medical specialist, medical generalist, public representative and patient representative. They also described the contributions of each role to priority-setting., Conclusions: Using the insights from decision-makers, we have described lessons related to direct involvement of members of the public and patients in priority-setting, and have identified six roles and the contributions of each role.

The 5' and 3' domains of yeast U6 snRNA contain sequences that are thought to be important for binding to Prp24 and Lsm proteins. By extensive mutational analysis of yeast U6 snRNA, we confirmed that the 3' terminal uridine tract of U6 snRNA is important for U6 binding to Lsm proteins in yeast. Binding of Prp24 protein to U6 RNA is dependent on or is strongly enhanced by U6 binding of Lsm proteins. This supports a model for U6 snRNP assembly in which U6 RNA binds to the Lsm2-8 core prior to binding Prp24 protein. Using compensatory base-pairing analysis, we show that at least half of the recently identified U6 telestem as well as a nucleotide sequence in the other half of the telestem are important for binding of U6 RNA to Prp24 protein. Surprisingly, disruption of base pairing in the unconfirmed half of the telestem enhanced U6-Prp24 binding. Truncation of the entire 3' terminal domain or nearly the entire 5' terminal domain of yeast U6 allowed for detectable levels of splicing to proceed in vitro. In addition to gaining knowledge of the function of the 5' and 3' domains of yeast U6, our results help define the minimal set of requirements for yeast U6 RNA function in splicing. We present a revised secondary structural model of yeast U6 snRNA in free U6 snRNPs.

In the pre-mRNA processing machinery of eukaryotic cells, U6 snRNA is located at or near the active site for pre-mRNA splicing catalysis, and U6 is involved in catalyzing the first chemical step of splicing. We have further defined the roles of key features of yeast U6 snRNA in the splicing process. By assaying spliceosome assembly and splicing in yeast extracts, we found that mutations of yeast U6 nt 56 and 57 are similar to previously reported deletions of U2 nt 27 or 28, all within yeast U2-U6 helix Ia. These mutations lead to the accumulation of yeast A1 spliceosomes, which form just prior to the Prp2 ATPase step and the first chemical step of splicing. These results strongly suggest that, at a late stage of spliceosome assembly, the presence of U2-U6 helix Ia is important for promoting the first chemical step of splicing, presumably by bringing together the 5' splice site region of pre-mRNA, which is base paired to U6 snRNA, and the branchsite region of the intron, which is base paired to U2 snRNA, for activation of the first chemical step of splicing, as previously proposed by Madhani and Guthrie [Cell, 1992, 71: 803-817]. In the 3' intramolecular stem-loop of U6, mutation G81C causes an allele-specific accumulation of U6 snRNP. Base pairing of the U6 3' stem-loop in yeast spliceosomes does not extend as far as to include the U6 sequence of U2-U6 helix Ib, in contrast to the human U6 3' stem-loop structure.

There are a number of impulses towards public participation in health care decision making including instrumentalist, communitarian, educative and expressive impulses and the desire for increased accountability. There has, however, been little research looking systematically at the public's preferences for being involved in particular types of rationing decisions, nor indeed, has there been a critical examination of the degree of involvement desired by the public. The research reported here uses findings from focus groups and in-depth interviews to explore these questions. Eight focus groups were conducted with a total of 57 informants, four amongst randomly selected members of the public and four with informants from health and non-health related organisations. Nineteen interviews were conducted to allow the elaboration of focus group comments, to probe views more deeply and to pursue emerging themes. The findings show variations in the willingness of members of the public to be involved in health care decisions and consistency across the different forms of the public as represented by the focus groups with randomly selected citizens and pre-existing organisations. There was a strong desire in all the groups for the public to be involved both at the system and programme levels, with much less willingness to be involved at the individual level. At the system and programme levels informants generally favoured consultation, without responsibility for decisions, but with the guarantee that their contribution would be heard and that decisions taken following consultation would be explained. At the patient level informants felt that the public should participate only by setting criteria for deciding between potential beneficiaries of treatment. The public has much to contribute, particularly at the system and programme levels, to supplement the inputs of health care professionals.

Pre-mRNA introns are spliced in a macromolecular machine, the spliceosome. For each round of splicing, the spliceosome assembles de novo in a series of ATP-dependent steps involving numerous changes in RNA-RNA and RNA-protein interactions. As currently understood, spliceosome assembly proceeds by addition of discrete U1, U2, and U4/U6*U5 snRNPs to a pre-mRNA substrate to form functional splicing complexes. We characterized a 45S yeast penta-snRNP which contains all five spliceosomal snRNAs and over 60 pre-mRNA splicing factors. The particle is functional in extracts and, when supplied with soluble factors, is capable of splicing pre-mRNA. We propose that the spliceosomal snRNPs associate prior to binding of a pre-mRNA substrate rather than with pre-mRNA via stepwise addition of discrete snRNPs.

Conceptual, methodological, and practical issues await those who seek to understand how to make better use of health services research in developing public policy. Some policies and some policymaking processes may lend themselves particularly well to being informed by research. Different conclusions about the extent to which policymaking is informed by research may arise from different views about what constitutes health services research (is it citable research or any professional social inquiry that can aid in problem solving?) or different views about what constitutes research use (is it explicit uses of research only, or does it also include tacit knowledge or the positions of stakeholders when they are informed by research and are influential in the policymaking process?). Some conditions may favor the use of research in policymaking, like sustained interactions between researchers and policymakers. Results from an exploratory study on the use of health services research by Canadian provincial policymakers illustrate these issues.