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Background Respiratory care is an important site for climate action, given that common treatments for conditions such as asthma and COPD produce significant greenhouse gas emissions, even as respiratory health is negatively impacted by climate change. Clinical guidelines provide key information for healthcare professionals and can promote approaches to healthcare that can mitigate negative environmental impacts, and optimise patient treatment, care delivery, and equitable outcomes, and bring awareness and legitimacy to sustainable healthcare practices. Methods Twenty national and international clinical respiratory guidelines were purposively selected and screened for inclusion of four principles of sustainable clinical practice: prevention, patient empowerment and self-care, lean service delivery, and low carbon alternatives. A screening framework specific to respiratory care implications was developed and used to review each guideline for mention of relevant topics, recommendations, and explicit links to sustainability in relation to each principle. Findings Sustainable clinical care principles were evident in most guidelines reviewed, environmental sustainability was mentioned infrequently. Many guidelines emphasised prevention (more secondary than primary) and support for patient preference and streamlining care, yet there was rarely mention of how these recommendations could contribute to lowering the environmental impacts of health systems. Low carbon alternatives were mentioned in only three guidelines. Conclusions While many clinical respiratory guidelines make recommendations in accordance with the principles of prevention, patient empowerment and self-care, and lean service delivery, reducing the carbon footprint of healthcare was rarely mentioned in the guidelines. Including explicit attention to the environmental impact of clinical care in guidance could support efforts to reduce the wider harms of healthcare, meanwhile, noting the clinical benefits of sustainable approaches could promote the uptake of recommendations. [ABSTRACT FROM AUTHOR]

A diversity of place‐based community economic practices that enact ethical interdependence has long enabled livelihoods in Monsoon Asia. Managed either democratically or coercively, these culturally inflected practices have survived the rise of a cash economy, albeit in modified form, sometimes being co‐opted to state projects. In the modern development imaginary, these practices have been positioned as ‘traditional’, ‘rural’ and largely superseded. But if we read against the grain of modernisation, a largely hidden geography of community economic practices emerges. This paper introduces the project of documenting keywords of place‐based community economies in Monsoon Asia. It extends Raymond William’s cultural analysis of keywords into a non‐western context and situates this discursive approach within a material semiotic framing. The paper has been collaboratively written with co‐researchers across Southeast Asia and represents an experimental mode of scholarship that aims to advance a post‐development agenda. [ABSTRACT FROM AUTHOR]

Drawing on institutional theory, this article articulates qualitative insights from a program of research on Canadian health technology-based ventures to examine the rules that characterize economic policy, capital investment, and regulatory approval as well as the way these institutions enable and constrain the development of ventures at an early stage. Our findings clarify how economic policy integrates these ventures into the entrepreneurial domain, how capital investment configures them for economic value extraction, and how regulatory approval fully releases their market value. These findings help to revisit current policy modernization initiatives by calling attention to the convergence among the three institutions. Rather than operating solely as a source of constraints, these institutions provide a highly integrated market-oriented space for health technology-based entrepreneurial activities to unfold. [ABSTRACT FROM AUTHOR]

Community-based primary health care describes a model of service provision that is oriented to the population health needs and wants of service users and communities, and has particular relevance to supporting the growing proportion of the population with multiple chronic conditions. Internationally, aspirations for community-based primary health care have stimulated local initiatives and influenced the design of policy solutions. However, the ways in which these ideas and influences find their way into policy and practice is strongly mediated by policy settings and institutional legacies of particular jurisdictions. This paper seeks to compare the key institutional and policy features of Ontario, Québec and New Zealand that shape the 'space available' for models of community-based primary health care to take root and develop. Our analysis suggests that two key conditions are the integration of relevant health and social sector organisations, and the range of policy levers that are available and used by governments. New Zealand has the most favourable conditions, and Ontario the least favourable. All jurisdictions, however, share a crucial barrier, namely the 'barbed-wire fence' that separates funding of medical and 'non-medical' primary care services, and the clear interests primary care doctors have in maintaining this fence. Moves in the direction of system-wide community-based primary health care require a gradual dismantling of this fence. [ABSTRACT FROM AUTHOR]

Objective To describe insulin pump use by youth since introduction of universal funding in Ontario, Canada and to explore the relationship between pump use and pediatric diabetes center characteristics and the relationship between discontinuation and center and patient characteristics. Research Design and Methods Observational, population-based cohort study of youth with type 1 diabetes (<19 yr) who received pump funding from 2006 to 2013 (n = 3700). We linked 2012 survey data from 33 pediatric diabetes centers to health administrative databases. We tested the relationship between center-level pump uptake and center characteristics (center type, physician model, and availability of 24-h support) using an adjusted negative binomial model; we studied center- and patient-level factors (socioeconomic status and baseline glycemic control) associated with discontinuation using a Cox proportional hazards model with generalized estimating equations. Results Pump users were more likely to be in the highest income quintile than non-pump users (29.6 vs. 19.1%, p < 0.0001). In 2012, mean percent pump use was 38.0% with variability across centers. There was no association between uptake and center characteristics. Discontinuation was low (0.42/100 person-yr) and was associated with being followed at a small community center [hazard ratio ( HR): 2.24 (1.05-4.76)] and being more deprived [ HR: 2.36 (1.14-1.48)]. Older age was associated with a lower rate of discontinuation [ HR: 0.31 (0.14-0.66)]. Conclusions Rates of pump use have increased since 2006 and discontinuation is rare. Large variation in uptake across centers was not explained by the factors we examined but may reflect variation in patient populations or practice patterns, and should be further explored. [ABSTRACT FROM AUTHOR]

Background: The Network of Ontario Pediatric Diabetes Programs was established in 2001 to provide access to specialized pediatric diabetes care. Universal funding for pediatric insulin pump therapy has been available in Ontario since 2006. The objective of this study was to describe the distribution of patients, resources and insulin pump use across centres within the network, now called the Ontario Paediatric Diabetes Network. Methods: We conducted a cross-sectional survey in 2012 of the 35 pediatric diabetes centres in Ontario to measure centre characteristics, patient volume and available clinical and social resources. We used health administrative data from the provincial Assistive Devices Program to describe patients aged 18 years or less using insulin pumps by centre as a measure of technology uptake. Results: All 35 centres participated, reporting a total of 6676 children with type 1 diabetes and 368 with type 2 diabetes. Most (> 80%) children with type 1 diabetes were followed at tertiary (n = 5) or large community (n = 14) centres. Nursing patient load was similar between centre types, but there was a large range across centres within any type. Overall, percent insulin pump use was 38.1% and varied widely across centres (5.3%-66.7%). Funded 24-hour support for pump users was available at 5 (36%) small community centres, 3 (19%) large community centres and 2 (40%) tertiary centres. Interpretation: Our study showed differences in access to specialized and after-hours care for children with diabetes in Ontario. Pump use varied widely across centres. Further research is needed to assess the impact of these observed differences on quality of care and outcomes. [ABSTRACT FROM AUTHOR]

Background The design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design. Methods The first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey. Discussion This study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants' creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations. [ABSTRACT FROM AUTHOR]

: The future clinical applications of whole genome sequencing come with speculation and enthusiasm but require careful consideration of the true system costs and health benefits of the clinical uses of this exciting technology. [ABSTRACT FROM AUTHOR]

The article offers information on the myths related to the informed consent in the newborn screening for krabbe disease. It states that there are communities that is bringing attention to screening as a full pathway, including screening tests, confirmatory testing and access to proven treatment, leading to reliable clinical benefits.

Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent. [ABSTRACT FROM AUTHOR]

Background. Increased availability of genetic testing is changing the primary care role in cancer genetics. The perspective of primary care physicians (PCPs) regarding their role in support of genetic testing has been explored, but little is known about the expectations of patients or the PCP role once genetic test results are received. [ABSTRACT FROM AUTHOR]

This essay is based on the recognition that the current 'downstream' health services research and policy approach to innovation misses the mark on one crucial point. It has not addressed how to promote the design of innovations that are likely to be more valuable than others. Re-visiting the ways in which health services research could inform innovation processes, this paper suggests that three attributes make innovations especially compelling from a health care system perspective: relevance; usability; and sustainability. These could be used as a starting point for outlining a policy-oriented research agenda that could bridge upstream design processes, and downstream needs and priorities. Given the pace at which innovations come about and the complexity of health care systems, we believe that both research and policy should be able to contribute significantly to the shaping of socially valuable technological change in health care. Recognizing that such a long-term goal cannot be reached through a linear, rationalistic process, our paper offers preliminary arguments to start to reconcile the health policy and innovation agendas. [ABSTRACT FROM AUTHOR]

Abstract: Developments in genetics are expected to have a profound impact on health and health care, yet much remains to be learned about how leaders of the research and clinical communities view and frame these expectations. We conducted a comprehensive review of editorials about developments in genetic medicine published in scientific journals, to understand what this elite group of commentators anticipate. Editorials are an important resource for understanding how the new genetics is understood and portrayed. They allow leaders of the research and clinical communities to communicate to each other and informed publics, and are a forum for the expression of widely shared elite beliefs and opinions. We analyzed selected editorials for content and metaphoric language to explore attitudes and expectations concerning developments in genetic science and technology. Our analysis suggests that a diverse group of leaders of the research and clinical communities are remarkably uniform in their discourse about the future of genetic medicine. Editorialists have great expectations for developments in basic science and in the comprehension and management of disease. They also anticipate important effects on health care, notably the health care professions, and on wider society. Yet editorialists do not discuss these prospects in a consistently positive or optimistic manner, and they utilize metaphoric imagery that emphasizes the inexorable nature of progress, and the sometimes ominous manner in which developments emerge. The dominant discourse of editorialists claims authority for clinicians and researchers and asserts a broad sphere of expertise, but it also positions these leaders as handmaidens of a science they do not control, and insists that their ultimate contribution is to prepare themselves and others for the inexorable march of progress. [Copyright &y& Elsevier]

Comments that population health researchers have privileged methodological considerations in their research and practice. Entry of researchers from various social disciplines; Recognition of the impact of social phenomena; Relevance of population health activities.

Enthusiasm for so-called 'personalized' or 'precision' medicine has encouraged the growth of the molecular diagnostics industry and the proliferation of high-priced proprietary tests that can predict, diagnose or inform the treatment of diverse clinical conditions. Through a case study of non-invasive prenatal testing (NIPT), we explore how the mechanisms governing the development and dissemination of this novel prenatal screening test are most aptly understood as a 'regulatory regime.' We describe how private actors tied to the manufacturers of this test form a network of "experts" that contribute to the coordination of this regime by virtue of their efforts to navigate the governance of test adoption and also form spaces in which the standards governing test adoption are developed. We draw attention to private actors in this regime to demonstrate that they are a constitutive element of the public policy system governing biomedical innovation and adoption. Through this case study of NIPT we deepen our previous analysis of the role of consultants in navigating and shaping a regulatory regime (Holloway and Miller, 2020) and offer new insight about how scientists work with consultants to shape a regulatory regime that serves industry interests. Our work indicates that the private actors tied to the manufacturers of NIPT (experts employed by industry to court scientists and lobby payers, scientists collaborating with industry, key opinion leaders involved with clinical practice guidelines, lobbyists and consultants), constitute an 'invisible college' that navigates the governance of test adoption. The formations and negotiations over standards for NIPT identified in this paper comprise a new institutional norm: a polycentric regulatory regime permeated by commercial interests. The institutionalization of this regime has implications for accountability, transparency and test quality amidst a proliferation of new proprietary molecular tests.' • A case study of mechanisms governing the dissemination of NIPT in the US. • Private actors tied to the manufacturers of NIPT constitute an invisible college. • These actors engage in various levels of knowledge production. • The invisible college navigates test adoption in a regulatory regime.. • This regime has implications for accountability, transparency and test quality. [ABSTRACT FROM AUTHOR]

Focuses on predictive genetic tests and health costs associated with them. How the cost impact will depend on how the availability of the test changes health care behaviors. How increased diagnostic imaging or molecular imaging may be important determinants of the health system impact of genetic testing; The need for effective surveillance and preventive activities; Possible discounts for genetic tests.