Project description:AccessLabs are workshops with two simultaneous motivations, achieved through direct citizen-scientist pairings: (1) to decentralise research skills so that a broader range of people are able to access/use scientific research, and (2) to expose science researchers to the difficulties of using their research as an outsider, creating new open access advocates. Five trial AccessLabs have taken place for policy makers, media/journalists, marine sector participants, community groups, and artists. The act of pairing science academics with local community members helps build understanding and trust between groups at a time when this relationship appears to be under increasing threat from different political and economic currents in society. Here, we outline the workshop motivations, format, and evaluation, with the aim that others can build on the methods developed.
Project description:BackgroundAgainst a backdrop of declining tobacco use, e-cigarette markets are growing. The UK now has a higher percentage of e-cigarette users than any other European country. These developments have prompted fierce discussions in scientific, advocacy and policy communities about how best to respond. This article is one of the first to examine the role of evidence in these debates.MethodsWe analysed 121 submissions to two Scottish policy consultations on e-cigarettes (in 2014 and 2015) and undertook interviews with 26 key informants in 2015-2016, following up with a sub-set in 2019-2020. All data were thematically coded, and our analysis was informed by insights from policy studies and the sociology of science.ResultsFirst, we affirm previous research in suggesting that e-cigarettes appeared to have triggered a breakdown of old public health alliances. Second, we demonstrate that, amid concerns about research quality and quantity, actors are guided by normative outlooks (and/or economic interests) in their assessments of evidence. Third, we show that, despite describing e-cigarette debates as contentious and polarised, actors engaging in Scottish policy debates exhibit a spectrum of views, with most interviewees occupying an uncertain 'middle ground' that is responsive to new evidence. Fourth, we suggest that the perceived divisiveness of e-cigarette debates is attributed to recurrent media simplifications and tensions arising from the behaviours of some actors with settled positions working to promote particular policy responses (including by strategically enrolling supportive evidence). Fifth, we argue that the actions of these actors are potentially explained by the prospect that e-cigarettes could usher in a new tobacco 'policy paradigm'. Finally, we show how scientific authority is employed as a tool within these debates.ConclusionsE-cigarette debates are likely to reconcile only if a clear majority of participants in the uncertain 'middle ground' settle on a more fixed position. Our results suggest that many participants in Scottish e-cigarette debates occupy this 'middle ground' and express concerns that can be empirically assessed, implying evidence has the potential to play a more important role in settling e-cigarette debates than previous research suggests.
Project description:As the bar to actively participate in one's own health is consistently lowered through technology, patients are helping to evolve traditional workflows to make data more accessible at the point of care. This growing trend of patient engagement and personalized medicine was the focus of the 2013 Mid-Atlantic Healthcare Informatics Symposium in Philadelphia, PA on April 26, 2013. The conference, presented annually by the Center for Bio-medical Informatics (CBMi) at The Children's Hospital of Philadelphia, featured plenary sessions, panel discussions, and paper presentations on a range of topics, including patient engagement and personalized medicine; using data and analytics to optimize patient care; nursing informatics; and the future of biomedical informatics.
Project description:The Pulmonary Vascular Research Institute GoDeep meta-registry is a collaboration of pulmonary hypertension (PH) reference centers across the globe. Merging worldwide PH data in a central meta-registry to allow advanced analysis of the heterogeneity of PH and its groups/subgroups on a worldwide geographical, ethnical, and etiological landscape (ClinTrial. gov NCT05329714). Retrospective and prospective PH patient data (diagnosis based on catheterization; individuals with exclusion of PH are included as a comparator group) are mapped to a common clinical parameter set of more than 350 items, anonymized and electronically exported to a central server. Use and access is decided by the GoDeep steering board, where each center has one vote. As of April 2022, GoDeep comprised 15,742 individuals with 1.9 million data points from eight PH centers. Geographic distribution comprises 3990 enrollees (25%) from America and 11,752 (75%) from Europe. Eighty-nine perecent were diagnosed with PH and 11% were classified as not PH and provided a comparator group. The retrospective observation period is an average of 3.5 years (standard error of the mean 0.04), with 1159 PH patients followed for over 10 years. Pulmonary arterial hypertension represents the largest PH group (42.6%), followed by Group 2 (21.7%), Group 3 (17.3%), Group 4 (15.2%), and Group 5 (3.3%). The age distribution spans several decades, with patients 60 years or older comprising 60%. The majority of patients met an intermediate risk profile upon diagnosis. Data entry from a further six centers is ongoing, and negotiations with >10 centers worldwide have commenced. Using electronic interface-based automated retrospective and prospective data transfer, GoDeep aims to provide in-depth epidemiological and etiological understanding of PH and its various groups/subgroups on a global scale, offering insights for improved management.
Project description:The Third Annual Albert Institute Bladder Symposium was held on September 8-10th, 2016, in Denver Colorado. Participants discussed several critical topics in the field of bladder cancer: 1) Best practices for tissue analysis and use to optimize correlative studies, 2) Modeling bladder cancer to facilitate understanding and innovation, 3) Targeted therapies for bladder cancer, 4) Tumor phylogeny in bladder cancer, 5) New Innovations in bladder cancer diagnostics. Our understanding of and approach to treating urothelial carcinoma is undergoing rapid advancement. Preclinical models of bladder cancer have been leveraged to increase our basic and mechanistic understanding of the disease. With the approval of immune checkpoint inhibitors for the treatment of advanced urothelial carcinoma, the treatment approach for these patients has quickly changed. In this light, molecularly-defined subtypes of bladder cancer and appropriate pre-clinical models are now essential to the further advancement and appropriate application of these therapeutic improvements. The optimal collection and processing of clinical urothelial carcinoma tissues samples will also be critical in the development of predictive biomarkers for therapeutic selection. Technological advances in other areas including optimal imaging technologies and micro/nanotechnologies are being applied to bladder cancer, especially in the localized setting, and hold the potential for translational impact in the treatment of bladder cancer patients. Taken together, advances in several basic science and clinical areas are now converging in bladder cancer. These developments hold the promise of shaping and improving the clinical care of those with the disease.
Project description:PurposeResearch collaborations can help to increase scientific productivity. The purpose of the present study was to draw up the knowledge flow network of the Endocrinology and Metabolism Research Institute (EMRI) affiliated to Tehran University of Medical Sciences.MethodsThe present study is a descriptive cross-sectional study on the publications of the EMRI. Web of Science Core collection databases were searched for the EMRI publications between 2002 to November 2019. Besides, publications were classified and visualized based on authorships (institutes and country of affiliation), and keywords (co-occurrence and trend). Scientometric methods including VOSviewer and HistCite were used for descriptive statistics and data analysis.ResultsTotal citations to the records were 47,528 and papers were published in 916 journals. The annual growth rate of publications and the citation was 14.2% and 18.9%, respectively. A total of 9466 authors from 136 countries collaborated in the publications. The co-authorship patterns showed that the average co-authorship and collaboration coefficient was 3.3 and 0.19.ConclusionKnowledge flow between EMRI researchers with international collaborations, engagement with leading countries, and interdisciplinary collaborations have an increasing trend. To develop a full picture of co-authorship, using social network analysis indicators are suggested for future studies.