plueme/wizJson huggingface dataset:
location: nan, 'Global 
year: 2019 source: BMC 
title: Using narratives to impact health policy-making: a systematic review 
abstract:BackgroundThere is increased interest in using narratives or storytelling to influence health policies. We aimed to systematically review the evidence on the use of narratives to impact the health policy-making process.MethodsEligible study designs included randomised studies, non-randomised studies, process evaluation studies, economic studies, qualitative studies, stakeholder analyses, policy analyses, and case studies. The MEDLINE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), WHO Global Health Library, Communication and Mass Media Complete, and Google Scholar databases were searched. We followed standard systematic review methodology for study selection, data abstraction and risk of bias assessment. We synthesised the findings narratively and presented the results stratified according to the following stages of the policy cycle: (1) agenda-setting, (2) policy formulation, (3) policy adoption, (4) policy implementation and (5) policy evaluation. Additionally, we presented the knowledge gaps relevant to using narrative to impact health policy-making.ResultsEighteen studies met the eligibility criteria, and included case studies (n = 15), participatory action research (n = 1), documentary analysis (n = 1) and biographical method (n = 1). The majority were of very low methodological quality. In addition, none of the studies formally evaluated the effectiveness of the narrative-based interventions. Findings suggest that narratives may have a positive influence when used as inspiration and empowerment tools to stimulate policy inquiries, as educational and awareness tools to initiate policy discussions and gain public support, and as advocacy and lobbying tools to formulate, adopt or implement policy. There is also evidence of undesirable effects of using narratives. In one case study, narrative use led to widespread insurance reimbursement of a therapy for breast cancer that was later proven to be ineffective. Another case study described how the use of narrative inappropriately exaggerated the perceived risk of a procedure, which led to limiting its use and preventing a large number of patients from its benefits. A third case study described how optimistic ‘cure’ or ‘hope’ stories of children with cancer were selectively used to raise money for cancer research that ignored the negative realities. The majority of included studies did not provide information on the definition or content of narratives, the theoretical framework underlying the narrative intervention or the possible predictors of the success of narrative interventions.ConclusionThe existing evidence base precludes any robust inferences about the impact of narrative interventions on health policy-making. We discuss the implications of the findings for research and policy.Trial registrationThe review protocol is registered in PROSPERO International prospective register of systematic reviews (ID = CRD42018085011).
location: nan, 'Global 
year: 2019 source: BMC 
title: Health researchers’ experiences, perceptions and barriers related to sharing study results with participants 
abstract:BackgroundAlthough research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants.MethodsWe used a mixed–methods concurrent triangulation design, relying on an online survey to capture health researchers’ experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes.ResultsRespondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers’ reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants’ health literacy and participants’ lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers.ConclusionsStudy findings contribute to the literature by documenting researchers’ perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing.
location: nan, 'Global 
year: 2019 source: BMC 
title: Blending integrated knowledge translation with global health governance: an approach for advancing action on a wicked problem 
abstract:BackgroundThe persistence of health inequities is a wicked problem for which there is strong evidence of causal roots in the maldistribution of power, resources and money within and between countries. Though the evidence is clear, the solutions are far from straightforward. Integrated knowledge translation (IKT) ought to be well suited for designing evidence-informed solutions, yet current frameworks are limited in their capacity to navigate complexity. Global health governance (GHG) also ought to be well suited to advance action, but a lack of accountability, inclusion and integration of evidence gives rise to politically driven action. Recognising a persistent struggle for meaningful action, we invite contemplation about how blending IKT with GHG could leverage the strengths of both processes to advance health equity.DiscussionAction on root causes of health inequities implicates disruption of structures and systems that shape how society is organised. This infinitely complex work demands sophisticated examination of drivers and disrupters of inequities and a vast imagination for who (and what) should be engaged. Yet, underlying tendencies toward reductionism seem to drive superficial responses. Where IKT models lack consideration of issues of power and provide little direction for how to support cohesive efforts toward a common goal, recent calls from the field of GHG may provide insight into these issues. Additionally, though GHG is criticised for its lack of attention to using evidence, IKT offers approaches and strategies for collaborative processes of generating and refining knowledge. Contemplating the inclusion of governance in IKT requires re-examining roles, responsibilities, power and voice in processes of connecting knowledge with action. We argue for expanding IKT models to include GHG as a means of considering the complexity of issues and opening new possibilities for evidence-informed action on wicked problems.ConclusionIntegrated learning between these two fields, adopting principles of GHG alongside the strategies of IKT, is a promising opportunity to strengthen leadership for health equity action.
location: nan, 'Global 
year: 2019 source: BMC 
title: ‘Virus Carriers’ and HIV testing: navigating Ukraine’s HIV policies and programming for female sex workers 
abstract:BackgroundThere are an estimated 80,100 female sex workers (FSWs) in Ukraine, of whom 7% are living with HIV. Early HIV diagnosis continues to be a public health priority in Ukraine as only approximately 54% of people living with HIV are diagnosed nationwide. This study aims to analyse the content, context and discourse of HIV testing policies among female sex workers in Ukraine and how these policies are understood and implemented in practice.MethodsTo analyse past and current national policies, we searched the database of the Ukrainian Parliament and the Ministry of Health for relevant policy documents (e.g. legislation and orders). To analyse the day-to-day practice of those involved in the implementation of these HIV programmes, we conducted face-to-face semi-structured interviews with key stakeholders. All data were coded using deductive thematic analysis initially guided by the Policy Triangle, a framework which addresses policy content, the process of policy-making, the health policy context, actors involved in policy formulation and implementation.ResultsHIV testing policies are formed and implemented in the post-Soviet context through a vertical system of AIDS clinics, resulting in the separation of key affected populations from the rest of the health system. Successive testing policies have been strongly influenced by international donors and non-governmental organisations. Furthermore, a lack of government funding for HIV prevention created a gap that international donors and local non-governmental organisations covered to ensure the implementation of testing policies. Their role, however, had limited influence on the Ukrainian government to increase funding for prevention, including testing of FSWs. Since the early 1990s, when stigmatising and discriminatory forced/mandatory HIV testing was applied, these approaches were slowly replaced with voluntary testing, self-testing and assisted HIV testing, yet stigma was found to be a barrier among FSWs to access testing.ConclusionPoor governance and the fragmentation of the health system, ongoing health sector reforms, shrinking international funding, and persisting stigma towards people living with HIV and sex workers might impede the continuity and sustainability of HIV testing programmes. Local civil society may now have the opportunity to contribute to the development and further implementation of HIV testing policies in Ukraine.
location: nan, 'Global 
year: 2019 source: BMC 
title: The impact generated by publicly and charity-funded research in the United Kingdom: a systematic literature review 
abstract:ObjectiveTo identify, synthesise and critically assess the empirical evidence of the impact generated by publicly and charity-funded health research in the United Kingdom.MethodsWe conducted a systematic literature review of the empirical evidence published in English in peer-reviewed journals between 2006 and 2017. Studies meeting the inclusion criteria were selected and their findings were analysed using the Payback Framework and categorised into five main dimensions, namely knowledge, benefits to future research and research use, benefits from informing policy and product development, health and health sector benefits, and broader economic benefits. We assessed the studies for risk of selection, reporting and funding bias.ResultsThirteen studies met the inclusion criteria. The majority of the studies (10 out of 13) assessed impact at multiple domains including the main five key themes of the Payback Framework. All of them showed a positive impact of funded research on outcomes. Of those studies, one (8%), six (46%) and six (46%) presented a low, moderate and high risk of bias, respectively.ConclusionsEmpirical evidence on the impact of publicly and charity-funded research is still limited and subject to funding and selection bias. More work is needed to establish the causal effects of funded research on academic outcomes, policy, practice and the broader economy.
location: nan, 'Global 
year: 2019 source: BMC 
title: The place of learning in a universal health coverage health policy process: the case of the RAMED policy in Morocco 
abstract:BackgroundTo progress towards universal health coverage (UHC), each country will have to develop its systemic learning capacity. This study aims at documenting how, across time, learning can feed into a UHC policy process, and how the latter can itself strengthen (or not) the learning capacity of the health system. It specifically focuses on the development of a major health financing policy aligned with the UHC goal in Morocco, the RAMED, a health financing scheme covering hospital costs for the poorest segment of the population.MethodsWe conducted a retrospective analysis of the RAMED policy for the period between 1997 and 2018, along with a case study design. For the data collection and analysis, we developed a framework combining Garvin’s learning organisation framework and the heuristic health policy analysis framework. We gathered data from key informants and document reviews.ResultsThe study confirmed the importance of learning during the different stages of the RAMED policy process. There is evidence of a leadership encouraging learning, the introduction and adoption of knowledge management processes, and the start of a transformation of the administrative culture. Yet, our study also showed some major shortcomings, especially the lack of structure of the learning, and insufficient effort to systemise and sustain a transformation of practices within the health administration. Our study also confirms that the learning changes in nature across the different stages of the policy process.ConclusionThe policy decisions and the implementation strategy create a learning dynamic, though not structured in all cases. Despite the positive interaction between learning and the RAMED policy, the opportunity to push forward a more structural transformation towards a learning system has not been fully seized. Hierarchical logics still largely prevail in the Moroccan health administration. The impact of future health policies for both the target beneficiaries and the health system will be bigger if their design integrates purposeful and structured actions in favour of organisational learning. This recommendation probably applies beyond Morocco.
location: nan, 'Global 
year: 2019 source: BMC 
title: Addressing fragility through community-based health programmes: insights from two qualitative case study evaluations in South Sudan and Haiti 
abstract:BackgroundFragility can have a negative effect on health systems and people’s health, and poses considerable challenges for actors implementing health programmes. However, how such programmes, in turn, affect the overall fragility of a context is rarely considered. The Swiss Red Cross has been active in South Sudan and Haiti since 2008 and 2011, respectively, and commissioned a scoping study to shed new light on this issue within the frame of a learning process launched in 2015.MethodsThe study consisted of a document review, qualitative field research undertaken between June and August 2015 in South Sudan and Haiti, and two data triangulation/validation workshops. Semi-structured key informant interviews and focus group discussions included 49 purposively sampled participants who helped build a deeper understanding of what constitutes and drives fragility in the respective countries. Moreover, interviews and focus group discussions served to grasp positive and negative effects that the Swiss Red Cross’s activities may have had on the overall state of fragility in the given contexts.ResultsQualitative data from the two case studies suggest that the community-based health programmes implemented in South Sudan and Haiti may have influenced certain drivers of fragility. While impacts cannot be measured or quantified in the absence of a baseline (the projects were not originally designed to mitigate overall fragility), the study nevertheless reveals entry points for designing programmes that are responsive to the overall fragility context and contain more specific elements for navigating a more sustainable pathway out of fragility. There are, however, multiple challenges, especially considering the complexity of fragile and conflict-affected contexts where a multitude of local and international actors with different goals and strategies interfere in a rapidly changing setting.ConclusionsHealth programmes may not only reach their health objectives but might potentially also contribute towards mitigating overall fragility. However, considerable hurdles remain for aid agencies, especially where scope for action is limited for a single actor and where engagement with state structures is difficult. Thus, cooperation and exchange with other aid and development actors across the spectrum has to be strengthened to increase the coherence of aid policies and interventions of actors both within and across the different aid communities.
location: nan, 'Global 
year: 2019 source: BMC 
title: The National Institute for Health Research Hyperacute Stroke Research Centres and the ENCHANTED trial: the impact of enhanced research infrastructure on trial metrics and patient outcomes 
abstract:BackgroundThe English National Institute for Health Research Clinical Research Network first established Hyperacute Stroke Research Centres (HSRCs) in 2010 to support multicentre hyperacute (< 9 h) and complex stroke research. We assessed the impact of this investment on research performance and patient outcomes in a post-hoc analysis of country-specific data from a large multicentre clinical trial.MethodsComparisons of baseline, outcome and trial metric data were made for participants recruited to the alteplase-dose arm of the international Enhanced Control of Hypertension and Thrombolysis Stroke study (ENCHANTED) at National Institute for Health Research Clinical Research Network HSRCs and non-HSRCs between June 2012 and October 2015.ResultsAmong 774 ENCHANTED United Kingdom participants (41% female; mean age 72 years), 502 (64.9%) were recruited from nine HSRCs and 272 (35.1%) from 24 non-HSRCs. HSRCs had higher monthly recruitment rates (median 1.5, interquartile interval 1.4–2.2 vs. 0.7, 0.5–1.3; p = 0.01) and shorter randomisation-to-treatment times (2.6 vs. 3.1 min; p = 0.01) compared to non-HSRCs. HSRC participants were younger and had milder stroke severity, but clinically important between-group differences in 90-day death or disability outcomes remained after adjustment for minimisation criteria and important baseline variables at randomisation, whether defined by ordinal modified Rankin scale score shift (adjusted OR 0.82, 95% CI 0.62–1.08; p = 0.15), scores 2 to 6 (adjusted OR 0.71, 95% CI 0.50–1.01; p = 0.05), or scores 3 to 6 (adjusted OR 0.82, 95% CI 0.57–1.17; p = 0.27). There was no significant difference in symptomatic intracerebral haemorrhage, nor heterogeneity in the comparative treatment effects between low- and standard-dose alteplase by HSRCs or non-HSRCs.ConclusionsInfrastructure investment in HSRCs was associated with improved research performance metrics, particularly recruitment and time to treatment with clinically important, though not statistically significant, improvements in patient outcomes.Trial RegistrationUnique identifier: NCT01422616.
location: nan, 'Global 
year: 2019 source: BMC 
title: A bibliometric analysis of health-related literature on natural disasters from 1900 to 2017 
abstract:BackgroundWorldwide, natural disasters have caused a large number of deaths and considerable morbidity. Nevertheless, limited information is available on how the health-related literature on natural disasters has evolved. The current study aims to assess the growth and pattern of health-related literature on natural disasters.MethodA bibliometric method was implemented using Scopus database for the period from 1900 to 2017. Keywords used in the search strategy were obtained from the classifications of natural disasters presented by the Centre for Research on the Epidemiology of Disasters. The health component was determined by selecting the health-related subject areas in Scopus.ResultsIn total, 9073 documents were retrieved. The annual number of publications showed a noticeable sharp increase after 2004. The retrieved documents received 97,605 citations, an average of 10.8 per document. The h-index of the retrieved documents was 113. Author keywords with the highest occurrence were ‘earthquakes’ followed by ‘disaster medicine’, ‘disaster planning’, ‘tsunami’, ‘mental health’, ‘disaster preparedness’, ‘PTSD’, ‘emergency preparedness’, and ‘public health’. Authors from the United States of America contributed to 3127 (34.5%) publications and ranked first, followed by those from Japan (700; 7.7%) and China (636; 7.0%). When research output was standardised by Gross Domestic Product per capita, India ranked first, followed by China and the United States. The United Kingdom had the highest percentage of documents with international authors, followed by those from Switzerland and Canada. The Prehospital and Disaster Medicine journal published the most articles (636; 7.0%). The Sichuan University and its affiliated hospital contributed to 384 (7.0%) documents and ranked first in the field.ConclusionThe current baseline information on health-related literature on natural disasters showed that this field is growing rapidly but with inadequate international research collaboration. Research collaboration in this field needs to be strengthened to improve the global response to natural disasters in any place in the world. There is a need to expand the research focus in this field to include communicable and non-communicable diseases. Finally, the health effects of other natural disasters, such as floods, droughts and disease outbreaks, need to be addressed.
location: nan, 'Global 
year: 2019 source: BMC 
title: Addressing the affordability of cancer drugs: using deliberative public engagement to inform health policy 
abstract:BackgroundHealth system expenditure on cancer drugs is rising rapidly in many OECD countries given the costly new treatments and increased rates of use due to a growing and ageing population. These factors put considerable strain on the sustainability of health systems worldwide, sparking public debate among clinicians, pharmaceutical companies, policy-makers and citizens on issues of affordability and equity. We engaged Canadians through a series of deliberative public engagement events to determine their priorities for making cancer drug funding decisions fair and sustainable in Canada’s publicly financed health system.MethodsAn approach to deliberation was developed based on the McMaster Health Forum’s citizen panels and the established Burgess and O'Doherty model of deliberative public engagement. Six deliberations were held across Canada in 2016. Transcripts were coded in NVivo and analysed to determine where participants’ views converged and diverged. Recommendations were grouped thematically.ResultsA total of 115 Canadians participated in the deliberative events and developed 86 recommendations.Recommendations included the review and regular re-review of approved drugs using ‘real-world’ evidence on effectiveness and cost-effectiveness; prioritisation of treatments that restore patients’ independence, mental health and general well-being; ensuring that decision processes, results and their rationales are transparent; and commitment to people with similar needs receiving the same care regardless of where in Canada they live.ConclusionsThe next steps for policy-makers should be to develop mechanisms for (1) re-reviewing effectiveness and cost-effectiveness data for all cancer drugs; (2) making disinvestments in cancer drugs that satisfy requirements relating to grandfathering and compassionate access; (3) ensuring fair and equitable access to cancer drugs for all Canadians; and (4) fostering a pan-Canadian approach to cancer drug funding decisions.