Progress of the Unique Fellowship in Health Research Evidence Synthesis in Nepal.

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  • Single Report
  • Cite Count Icon 14
  • 10.1002/14651858.cd202002
Collaborating in response to COVID-19: editorial and methods initiatives across Cochrane
  • Dec 10, 2020
  • Jeremy Grimshaw + 5 more

With the emergence of the COVID-19 pandemic, health decision-makers needed trustworthy evidence to help answer many questions, and they needed it quickly. During 2020, the Cochrane community worked with partners to find ways to respond to this situation and meet the needs of evidence users. This Supplement to the Cochrane Database of Systematic Reviews collects initiatives involving Cochrane groups, in the form of short reports.The Full Text of this article is available as a PDF.

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  • Single Report
  • 10.3310/nihropenres.1115203.1
Evidence Synthesis Programme (ESP) Logic Model
  • Feb 9, 2023
  • Ianina Conte

The Evidence Synthesis Programme (ESP) is part of the National Institute for Health and Care Research (NIHR). As such, it aims to contribute to the NIHR's mission of improving the health and wealth of the nation by generating high-quality evidence syntheses (ES) to support evidence-informed health and care policy and practice. More information about the programme can be found on the NIHR website. A logic model is a graphical way to show how an activity, programme or intervention is expected to work and bring about the benefits and changes it intends to achieve. By summarising the core elements, a logic model can then be used to support programme planning, implementation and evaluation. NIHR logic models represent in a linear flow diagram the key activities, outputs, outcomes and impacts of each funding programme as a series of logical steps. This logic model sets out the essential elements of, and pathway to, impact for the NIHR ESP. Evidence syntheses are research projects that use formal techniques to bring together, evaluate and combine data from multiple studies to summarise and make sense of the existing body of research evidence on a particular topic.

  • Research Article
  • 10.1371/journal.pone.0316508
Analysis of the determinants for using health research evidence in health planning in Tanzania: a cross-sectional study.
  • May 28, 2025
  • PloS one
  • Pius Kagoma + 2 more

The use of health research evidence is essential for informed decision-making and effective health planning. Despite its importance, there is limited understanding of the determinants for the use of such evidence in planning processes, particularly in lower-middle-income countries (LMICs) like Tanzania. This study aims to investigate the proportion and determinants that affect the use of health research evidence in health planning in Tanzania. This quantitative study employed a cross-sectional design. Data on health research evidence and the factors influencing its use were collected using a structured questionnaire from 422 healthcare workers involved in planning within 9 regions of Tanzania from October to December 2023. The association between categorical variables was assessed using a chi-square test, while regression analysis was conducted to identify determinants, both at a 95% confidence level. The study revealed that 270 (66.2%) of health planning team members strongly agreed that they use health research evidence during planning. Several key determinants were significantly associated with the level of research evidence utilization. These included limited dissemination of research findings (74.5%), inadequate human and non-human resources (70.0%), and insufficient knowledge and training in research (63.7%). A multivariate regression analysis confirmed significant associations between the determinants and the use of research evidence (p<0.05). Descriptive statistics revealed that over 70% of respondents identified the presence of research coordinators, partnerships with universities, availability of research budgets, and internet access as important factors in their research. Inferential analysis indicated that these factors were statistically significantly associated with the use of health research evidence. In addition, more than half of the participants stated motivational factors, such as the presence of continuous quality improvement initiatives, the availability of short- and long-term training programs, on-the-job training opportunities, and incentives like extra duty allowances, as contributors to the enhanced use of research evidence. Bottom of Form. The study found that planning team members used health research evidence in planning, but several determinants, such as lack of dissemination, resource shortages, and inadequate training, persisted. Interventions should focus on improving dissemination, resources, and training. Future research should explore strategies for enhancing these interventions.

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  • Research Article
  • Cite Count Icon 3
  • 10.2196/resprot.9285
Facilitating Web-Based Collaboration in Evidence Synthesis (TaskExchange): Development and Analysis.
  • Dec 13, 2018
  • JMIR Research Protocols
  • Tari Turner + 3 more

BackgroundThe conduct and publication of scientific research are increasingly open and collaborative. There is growing interest in Web-based platforms that can effectively enable global, multidisciplinary scientific teams and foster networks of scientists in areas of shared research interest. Designed to facilitate Web-based collaboration in research evidence synthesis, TaskExchange highlights the potential of these kinds of platforms.ObjectiveThis paper describes the development, growth, and future of TaskExchange, a Web-based platform facilitating collaboration in research evidence synthesis.MethodsThe original purpose of TaskExchange was to create a platform that connected people who needed help with their Cochrane systematic reviews (rigorous syntheses of health research) with people who had the time and expertise to help. The scope of TaskExchange has now been expanded to include other evidence synthesis tasks, including guideline development. The development of TaskExchange was initially undertaken in 5 agile development phases with substantial user engagement. In each phase, software was iteratively deployed as it was developed and tested, enabling close cycles of development and refinement.ResultsTaskExchange enables users to browse and search tasks and members by keyword or nested filters, post and respond to tasks, sign up to notification emails, and acknowledge the work of TaskExchange members. The pilot platform has been open access since August 2016, has over 2300 members, and has hosted more than 630 tasks, covering a wide range of research synthesis-related tasks. Response rates are consistently over 75%, and user feedback has been positive.ConclusionsTaskExchange demonstrates the potential for new technologies to support Web-based collaboration in health research. Development of a relatively simple platform for peer-to-peer exchange has provided opportunities for systematic reviewers to get their reviews completed more quickly and provides an effective pathway for people to join the global health evidence community.

  • Research Article
  • Cite Count Icon 2
  • 10.1108/jhom-01-2019-0008
Health researchers and policy makers involvement in knowledge translation activities in Malawi
  • Jun 12, 2019
  • Journal of Health Organization and Management
  • Patrick Mapulanga + 2 more

PurposeThe purpose of this paper is to explore health researchers’ involvement of policy or decision makers in knowledge translation activities in Malawi.Design/methodology/approachThe case study collected quantitative through questionnaire from health researchers from the University of Malawi. The study used inferential statistics for the analysis of the quantitative data. Pearson χ2 test was used to establish the relationship between categorical data and determine whether any observed difference between the data sets arose by chance. The Kruskal–Wallis H test was used to determine if there were statistically significant differences between independent variable and dependent variables. Data has been presented in a form of tables showing means, standard deviation and p-values.FindingsHealth researchers sometimes involve policy or decision makers in government-sponsored meetings (M=2.5, SD=1.17). They rarely involve policy or decision makers in expert committee or group meetings (M=2.4, SD=1.20). Researchers rarely involve policy or decision makers in conferences and workshops (M=2.4, SD=1.31). Rarely do researchers involve policy or decision makers in formal private or public networks (M=2.4, SD=1.17). In events organised by the colleges researchers rarely involve policy or decision makers (M=2.3, SD=1.11); and rarely share weblinks with policy or decision makers (M=2.0, SD=1,17). On average, health researchers occasionally conduct deliberate dialogues with key health policy makers and other stakeholders (M=2.5, SD=1.12). The researchers rarely established and maintained long-term partnerships policy or decision makers (M=2.2, SD=1.20). They rarely involve policy or decision makers in the overall direction of the health research conducted by themselves or the Colleges (M=2.1, SD=1.24).Research limitations/implicationsThe study recommends that there should be deliberate efforts by health researchers and policy makers to formally engage each other. Individuals need technical skills, knowledge of the processes and structures for engaging with health research evidence to inform policy and decision making. At the institutional level, the use of research evidence should be embedded within support research engagement structures and linked persons.Practical implicationsFormal interactions in a form of expert meetings and technical working groups between researchers and policy makers can facilitate the use of health research evidence in policy formulation.Social implicationsIn terms of framework there is need to put in place formal interaction frameworks between health researchers and policy makers within the knowledge translation and exchange.Originality/valueThere is dearth of literature on the levels of involvement and interaction between health researchers and health policy or decision makers in health policy, systems and services research in Malawi. This study seeks to bridge the gap with empirical evidence.

  • Research Article
  • Cite Count Icon 3
  • 10.1108/ijhg-05-2019-0029
Research-evidence-based health policy formulation in Malawi
  • Feb 24, 2020
  • International Journal of Health Governance
  • Patrick Mapulanga + 2 more

PurposeThe paper seeks to report on research-evidence-based health policy formulation in Malawi based on interviews with policymakers and questionnaire administered to health researchers.Design/methodology/approachQuantitative data for inferential statistical analysis was obtained through a questionnaire administered to researchers in the University of Malawi's College of Medicine and the Kamuzu College of Nursing. Interviews were conducted with four directors holding decision-making national health policy roles in the Ministry of Health and the National Assembly. The five national policymakers interviewed constituted five of the nine interviewees. The remaining four interviewed represented other government agencies and non-governmental organisations in the health sector. These constituted a piloted group of health policymakers in Malawi. Data from interviews shows illustrative comments typical of consistent perspectives among interviewees. Where they disagreed, divergent views have been presented.FindingsThe survey has revealed that health researchers rarely interact with health policymakers. Policymakers rarely attend researchers' workshops, seminars and conferences. Researchers prefer to interact with policymakers through expert committees or technical working groups. However, the meetings are called by policymakers at their own will. In terms of health research designed for user relevance, survey respondents suggested that developing research products; formulating study objectives; analysing and interpreting research findings and; developing research designs and methods were their responsibility. However, policymakers felt that research evidence should appeal to specific priorities needed by health policymakers in policy formulation. Health researchers suggested that health research evidence should be communicated through syntheses of the research literature and reprints of articles published in scientific journals. However, policymakers were of the view that research products should not be bulky, should be presented in points form and should provide options for specific policy areas.Practical implicationsUniversity research groups and technical working groups provide an opportunity for interacting and enhancing the use of health research evidence.Originality/valueFor the purposes of facilitating the use of research evidence into policy, the study provides a low-cost framework for linking research groups and technical working groups to inform health research utilisation.

  • Research Article
  • Cite Count Icon 21
  • 10.1111/jebm.12505
Study within a review (SWAR)
  • Dec 1, 2022
  • Journal of Evidence-Based Medicine
  • Declan Devane + 7 more

Study within a review (SWAR)

  • Research Article
  • Cite Count Icon 2
  • 10.1108/lhs-09-2018-0050
Levels of research evidence in health policy assessment in Malawi.
  • Mar 21, 2019
  • Leadership in Health Services
  • Patrick Mapulanga + 2 more

The purpose of this study is to examine levels of health research evidence in health policies in Malawi. The study selected a typology of health policies in Malawi from 2002 to 2017. The study adopted the SPIRIT conceptual framework and assessed the levels of research evidence in health policy, systems and services research using the revised SAGE policy assessment tool. Documentary analysis was used to assess levels of health research evidence in health policies in Malawi. In 29 (96.7 per cent) of the health policies, policy formulators including healthcare directors and managers used generic search engines such as Google or Google Scholar to look for heath research evidence. In 28 (93.3 per cent) of the health policies, they searched for grey literature and other government documents. In only 6 (20 per cent) of the heath policy documents, they used academic literature in a form of journal articles and randomised controlled trials. No systematic reviews or policy briefs were consulted. Overall, in 23 (76.7 per cent) of the health policy documents, health research evidence played a minimal role and had very little influence on the policy documents or decision-making. The empirical evidence in the health policy documents are limited because of insufficient research citation, low retrievability of health research evidence in the policy documents and biased selectivity of what constitutes health research evidence. The study indicates that unfiltered information (data from policy evaluations and registries) constitutes majority of the research evidence in health policies both in health policy, systems and services research. The study seeks to advocate for the use of filtered information (peer reviewed, clinical trials and data from systematic reviews) in formulating health policies. There is dearth of literature on the levels of health research evidence in health policy-making both in health policy, systems and services research. This study seeks to bridge the gap with empirical evidence from a developing country perspective.

  • Research Article
  • Cite Count Icon 16
  • 10.1111/hae.13176
Research and policy implications of a recently published controlled study in previously untreated haemophilia patients at high risk of inhibitor development
  • Feb 20, 2017
  • Haemophilia
  • A Iorio

HaemophiliaVolume 23, Issue 3 p. 350-352 Letter to the Editor Research and policy implications of a recently published controlled study in previously untreated haemophilia patients at high risk of inhibitor development A. Iorio, Corresponding Author A. Iorio iorioa@mcmaster.ca orcid.org/0000-0002-3331-8766 Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, CanadaCorrespondence: Alfonso Iorio, Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, Canada, L8S 4K1. Tel.: +1 905 525 9140; fax: +1 905 577 8478; e-mails: iorioa@mcmaster.caSearch for more papers by this author A. Iorio, Corresponding Author A. Iorio iorioa@mcmaster.ca orcid.org/0000-0002-3331-8766 Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, CanadaCorrespondence: Alfonso Iorio, Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, Canada, L8S 4K1. Tel.: +1 905 525 9140; fax: +1 905 577 8478; e-mails: iorioa@mcmaster.caSearch for more papers by this author First published: 20 February 2017 https://doi.org/10.1111/hae.13176Citations: 14Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume23, Issue3May 2017Pages 350-352 RelatedInformation

  • Conference Article
  • 10.1136/bmjebm-2019-ebmlive.17
9 Hierarchical arrangement of scholarly and novel information (HASANI): a digital platform to synthesize research evidence in real time
  • Jul 1, 2019
  • Izhar Hasan + 3 more

Objectives Our main objective is to create a real time evidence generating platform for the most uptodate evidence-based practice with following specific goals. Implement a digital curation framework to automate knowledge extraction and summerization of published and unpublished publications Implement a critical appraisal process at the time of publication submission to journals. Implement an integrated visual abstract application for authors to submit critically appraised elements of the study Implement an automated data analytical interface to generate automated systematic reviews and meta–analysis Implement a platform API for publishers to automatically summarize their published papers for automated systematic reviews and met analysis. Method We designed and implemented a platform for automating the research evidence synthesis. The application is implemented as SaaS-based model in angular JS framework with Application program interface (API) to integrate with online journals. This creates an opportunity to synthesize research evidence in real time for a given research topic, population or territory. Each publisher or organization can customize templates for various study types to create automated systematic review, meta-analysis, and qualitative review studies Results A beta testing of our platform (HASANI) has been conducted to display the automated article summary creation from critical appraisal elements. Preliminary beta study results confirmed that our framework was efficient in identifying, curating and synthesizing the literature article summary of a given article to pool against similar studies. This strategy not only saves time and money in synthesizing new research evidence, but also provides a platform for insuring a quality research publication as it eliminates a human bias and errors. A real time automated pooling of similar research studies expedites a creation of automated systematic reviews generation which addresses the research publication overload in coming years Conclusions We have designed and implemented a web-based automated literature reading and curating framework for research evidence synthesis in real time. Our initial findings provide supportive evidence of automating the literature curating and extraction strategy. In addition, it provides an excellent future digital curation strategy for journal publishers to streamline the synthesis of research evidence by requesting authors to submit the pre-appraised critical elements of the relevant study types. This strategy provides a reassurance to academic audience that published articles have been formally appraised to be included in building a research evidence towards a particular topic or subject. More importantly, a real-time knowledge synthesis from this strategy will provide a more robust and uptodate practice guidelines for clinicians to focus on interpretation of research findings for applicability in their patient population, rather waiting for new systematic review and meta-analysis creation.

  • Research Article
  • Cite Count Icon 2
  • 10.3310/lkrt4721
Artificial intelligence software for analysing chest X-ray images to identify suspected lung cancer: an evidence synthesis early value assessment.
  • Aug 1, 2024
  • Health technology assessment (Winchester, England)
  • Jill Colquitt + 8 more

Lung cancer is one of the most common types of cancer in the United Kingdom. It is often diagnosed late. The 5-year survival rate for lung cancer is below 10%. Early diagnosis may improve survival. Software that has an artificial intelligence-developed algorithm might be useful in assisting with the identification of suspected lung cancer. This review sought to identify evidence on adjunct artificial intelligence software for analysing chest X-rays for suspected lung cancer, and to develop a conceptual cost-effectiveness model to inform discussion of what would be required to develop a fully executable cost-effectiveness model for future economic evaluation. The data sources were MEDLINE All, EMBASE, Cochrane Database of Systematic Reviews, Cochrane CENTRAL, Epistemonikos, ACM Digital Library, World Health Organization International Clinical Trials Registry Platform, clinical experts, Tufts Cost-Effectiveness Analysis Registry, company submissions and clinical experts. Searches were conducted from 25 November 2022 to 18 January 2023. Rapid evidence synthesis methods were employed. Data from companies were scrutinised. The eligibility criteria were (1) primary care populations referred for chest X-ray due to symptoms suggestive of lung cancer or reasons unrelated to lung cancer; (2) study designs that compared radiology specialist assessing chest X-ray with adjunct artificial intelligence software versus radiology specialists alone and (3) outcomes relating to test accuracy, practical implications of using artificial intelligence software and patient-related outcomes. A conceptual decision-analytic model was developed to inform a potential full cost-effectiveness evaluation of adjunct artificial intelligence software for analysing chest X-ray images to identify suspected lung cancer. None of the studies identified in the searches or submitted by the companies met the inclusion criteria of the review. Contextual information from six studies that did not meet the inclusion criteria provided some evidence that sensitivity for lung cancer detection (but not nodule detection) might be higher when chest X-rays are interpreted by radiology specialists in combination with artificial intelligence software than when they are interpreted by radiology specialists alone. No significant differences were observed for specificity, positive predictive value or number of cancers detected. None of the six studies provided evidence on the clinical effectiveness of adjunct artificial intelligence software. The conceptual model highlighted a paucity of input data along the course of the diagnostic pathway and identified key assumptions required for evidence linkage. This review employed rapid evidence synthesis methods. This included only one reviewer conducting all elements of the review, and targeted searches that were conducted in English only. No eligible studies were identified. There is currently no evidence applicable to this review on the use of adjunct artificial intelligence software for the detection of suspected lung cancer on chest X-ray in either people referred from primary care with symptoms of lung cancer or people referred from primary care for other reasons. Future research is required to understand the accuracy of adjunct artificial intelligence software to detect lung nodules and cancers, as well as its impact on clinical decision-making and patient outcomes. Research generating key input parameters for the conceptual model will enable refinement of the model structure, and conversion to a full working model, to analyse the cost-effectiveness of artificial intelligence software for this indication. This study is registered as PROSPERO CRD42023384164. This award was funded by the National Institute for Health and Care Research (NIHR) Evidence Synthesis programme (NIHR award ref: NIHR135755) and is published in full in Health Technology Assessment; Vol. 28, No. 50. See the NIHR Funding and Awards website for further award information.

  • Research Article
  • 10.1017/s0047404507070650
Fred Genesee, Katheryn Lindholm-Leary, William M. Saunders, and Donna Christian (eds.), Educating English language learners: A synthesis of research evidence
  • Aug 14, 2007
  • Language in Society
  • Seyyed-Abdolhamid Mirhosseini

Fred Genesee, Katheryn Lindholm-Leary, William M. Saunders, and Donna Christian (eds.), Educating English language learners: A synthesis of research evidence. Cambridge: Cambridge University Press, 2006. Pp. x, 245. Pb $24.99. Educating English language learners appeared as a result of a U.S. government-funded project in an attempt to synthesize “research on the relationship among oral language, literacy, and academic achievement for English language learners (ELLs) in the United States” (1). Referring to what Donna Christian calls “educational facts” (1) about the lower academic ability of students with limited English proficiency, and placing institutionalized academic achievement at the center of their discussions, the contributors review three databases and a number of journals of language and education. They explore research trends in the education of English as a second language in the past 20 years, how research findings have been applied in U.S. schools, and possible future research directions.

  • Research Article
  • 10.3310/khgp7129
Rapid tests to inform triage and antibiotic prescribing decisions for adults presenting with suspected acute respiratory infection: a rapid evidence synthesis of clinical effectiveness and cost-utility studies.
  • May 1, 2025
  • Health technology assessment (Winchester, England)
  • Katie Scandrett + 12 more

This review assessed the clinical- and cost-effectiveness of point-of-care tests to guide the initial management of people presenting with suspected acute respiratory infection. Searches for systematic reviews, randomised controlled trials and cost-utility studies were conducted in May 2023. Sources included MEDLINE, Epistemonikos, EMBASE, Cochrane Central Register of Controlled Trials, the Cost-effectiveness Analysis Registry and reference checking. Eligible studies included people (≥ 16 years) making initial contact with the health system with symptoms suggestive of acute respiratory infection. Risk of bias in randomised controlled trials was assessed using the Cochrane risk-of-bias tool. The Drummond checklist was used for cost-utility studies. Meta-analyses of clinical outcomes were conducted to estimate summary risk ratios with 95% confidence intervals. Study characteristics and main results were summarised narratively and tabulated. Fourteen randomised controlled trials were included; all had a high risk of bias. Ten randomised controlled trials analysed point-of-care tests for C-reactive protein. Compared with usual care, the effects on hospital admissions and mortality were highly uncertain due to sparse data. Three randomised controlled trials had heterogeneous findings on the resolution of symptoms/time to full recovery. The risk of re-consultations increased in patients receiving C-reactive protein point-of-care tests (pooledrisk ratio 1.61, 95% confidence interval 1.07 to 2.41; four studies). There was a reduction in antibiotics initially prescribed (C-reactive protein point-of-care tests vs. usual care: pooled risk ratio 0.75, 95% confidence interval 0.68 to 0.84; nine studies). The effects of procalcitonin point-of-care tests compared with usual care on hospital admission, escalation of care, and duration of symptoms were very uncertain as only one randomised controlled trial was included. The study found a large reduction in antibiotic prescriptions within 7 days. Two studies revealed a large reduction in initial antibiotic prescriptions for Group A streptococcus point-of-care tests versus usual care. Only one study compared an influenza point-of-care test with usual care. The effect of the antibiotics prescribed was very uncertain. No deaths occurred in either treatment group. Six of the 17 included cost-utility studies were judged to be directly applicable to our review, 4 of which focused on the C-reactive protein point-of-care test. The results suggested that the C-reactive protein point-of-care test is potentially cost-effective; these studies were generally limited to capturing only short-term costs and consequences. One study evaluated 14 different point-of-care tests for Group A streptococcus; none were cost-effective compared with usual care. A further study evaluated two rapid tests (Quidel for influenza [Quidel Corp, San Diego, CA, USA], and BinaxNOW [Binax, Inc., Portland, ME, USA])for the pneumococcal antigen) compared to culture/serology and found that they were not cost-effective. Rapid synthesis methods were used, so relevant studies may have been missed. No evidence was identified for several review questions. C-reactive protein point-of-care test may reduce the number of patients given an antibiotic prescription but could increase the rate of re-consultations. C-reactive protein point-of-care test may potentially be cost-effective but existing estimates were based on very small and uncertain gains in quality-adjusted life-years and only accounted for short-term costs and consequences. There was very limited or an absence of evidence for other point-of-care tests. Research is needed to explore the impact of point-of-care tests on triaging decisions across different clinical settings and to quantify the longer-term health and cost consequences. This study is registered as PROSPERO CRD42023429515. This award was funded by the National Institute for Health and Care Research (NIHR) Evidence Synthesis programme (NIHR award ref: NIHR159946) and is published in full in Health Technology Assessment; Vol. 29, No. 13. See the NIHR Funding and Awards website for further award information.

  • Research Article
  • Cite Count Icon 1
  • 10.3310/djrf1124
Evaluating whole genome sequencing for rare diseases in newborn screening: evidence synthesis from a series of systematic reviews.
  • Dec 1, 2025
  • Health technology assessment (Winchester, England)
  • Karoline Freeman + 20 more

Newborn screening using whole genome sequencing is being evaluated in numerous projects across the world, including Genomics England Limited's Generation Study. It presents considerable challenges for policy advisors, not least, given the logistics of simultaneously evaluating the evidence for the suggested 200 rare genetic conditions. The 'genotype-first' approach has the potential for harms through overdiagnosis, and benefits are uncertain. To assess different approaches to evaluating whole genome sequencing for newborn screening to inform the development of a robust method of evaluation for informing policy decisions. We approached the objective with systematic review methods for a sample of five conditions (considering gene penetrance, expressivity, accuracy and effectiveness of whole genome sequencing and effect of earlier treatment) (search inception to November 2023), evaluated the National Institutes of Health [US] Clinical Genome Resource (ClinGen) as an alternative evidence source for the five conditions and we compared this to a review of genomic studies of newborn screening cohorts reporting penetrance for pathogenic variants of any paediatric condition (search inception to February 2024). We undertook a methodological review of economic evaluations of whole genome sequencing/whole exome sequencing (search inception to January 2024) and explored public views on evaluating whole genome sequencing. MEDLINE (Ovid), EMBASE (Ovid), Web of Science, Science Citation Index (via Clarivate), the Cochrane Library (via Wiley), cost-effectiveness analysis registry and American Economic Association electronic bibliography. Actionability reports and scores from the Clinical Genome Resource website (downloaded 30 April 2024). The traditional review approach identified 268 studies reporting the genetic spectrum of individuals with the five conditions or benefits of earlier, symptomatic treatment. No evidence on the penetrance and expressivity or the accuracy or effectiveness of whole genome sequencing in newborns was identified. A review of 200 conditions would take a team of five reviewers 23 years to complete. Clinical Genome Resource reviews were available for four or five conditions. All four 'actionability' ratings disagreed with the findings of our reviews. Our review of 14 genomic studies of newborn screening cohorts found insufficient information to allow individual highly penetrant pathogenic variants for any condition to be identified. None of the 86 economic evaluations of whole genome sequencing or whole exome sequencing were set in a screening context. Some micro-costing studies are available that could help understand the resource use and costs associated with whole genome sequencing. Following a series of patient and public involvement meetings, attendees appreciated the uncertainties of whole genome sequencing. A wider stakeholder perspective is needed to inform policy decisions. Although we only examined five conditions in depth, the consistency in lack of data suggests that our conclusions are robust. The systematic review approach for evaluating whole genome sequencing of newborns identified a paucity of high-quality evidence. Extending the review to all 200 conditions is not feasible. Currently, the use of existing genome resources and review of genomic studies of newborn screening cohorts are not viable alternatives. The cost-effectiveness of whole genome sequencing in a newborn screening context is unknown. Large-scale collaborative research is required to evaluate the short- and long-term harms, benefits and economic implications of whole genome sequencing for screening newborns. We propose a staged approach to evaluation, considering only conditions with pathogenic variants with high penetrance to minimise harm from overdiagnosis. This study is registered as PROSPERO CRD42023475529. This award was funded by the National Institute for Health and Care Research (NIHR) Evidence Synthesis Programme (NIHR award ref: NIHR159928) and is published in full in Health Technology Assessment; Vol. 29, No. 65. See the NIHR Funding and Awards website for further award information.

  • Research Article
  • 10.1186/s40352-025-00361-5
Understanding the health and well-being impacts and implementation barriers and facilitators of legally-mandated non-custodial drug and alcohol treatment for justice-involved adults: a qualitative evidence synthesis.
  • Oct 1, 2025
  • Health & justice
  • Emma Fiona France + 12 more

Non-custodial judicial treatment orders aim to reduce recidivism for justice-involved people with drug and/or alcohol use problems, but health and well-being impacts are not understood. We conducted the first qualitative evidence synthesis to explore the perceived impacts on health and well-being of treatment orders and the perceived barriers and facilitators to implementation from the perspectives of justice-involved adults, their family members/significant others, and staff delivering/ mandating the treatment. We searched 14 bibliographic databases (31/10/2023-07/11/2023) and conducted supplementary searches to identify qualitative evidence. Two reviewers appraised methodological limitations using CASP and assessed confidence in review findings using GRADE-CERQual. We used framework synthesis to synthesise evidence. We integrated synthesised findings with results of a complementary quantitative review investigating health and well-being effects of treatment orders. We synthesised 25 studies (29 reports); 22/29 reports had moderate or high methodological limitations. Most studies (n = 20) focused on USA drug courts; none focused on alcohol interventions. Only three studies had health and well-being as their main focus. No studies involved family members. Only one study reported a theory of how treatment orders might impact health. GRADE-CERQual assessments of 13 findings were high (n = 7/13), moderate (n = 4/13), or low (n = 2/13) confidence. Justice-involved adults perceived treatment orders to reduce mortality/morbidity risk, improve sense of self and coping with emotions, to result in feeling healthier, but also to exacerbate trauma and increase stress. Coerced treatment was perceived to interfere with "therapeutic change," nonetheless it was often perceived to reduce, cease and/or stabilise illicit drug use. Justice-involved adults' challenging life circumstances were an important barrier to reducing/ ceasing substance use. Abstinence-based approaches were common but abstinence may be unrealistic. Intervention effectiveness trials rarely measured relational outcomes of importance to justice-involved adults e.g., impacts on their children, or health outcomes. High-quality qualitative studies are urgently needed on the health impacts of diverse treatments orders. Treatment orders should emphasise harm-reduction treatment approaches and address participants' healthcare and social needs. Theories of how treatment orders work are needed. Unintended negative health consequences of treatment orders must be researched. Future trials should measure and report health and relational outcomes. Study protocol registration: [CRD42023484923]. The National Institute for Health and Care Research (NIHR) Evidence Synthesis Programme (Grant: NIHR153425, project number NIHR162046) funded this study.

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