Sixth Annual Scientific Workshops and Debates of the Pulmonary Vascular Research Institute (PVRI).
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PROVIDER: S-EPMC4070805 | biostudies-literature | 2013 Sep
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Sixth Annual Scientific Workshops and Debates of the Pulmonary Vascular Research Institute (PVRI).
Pulmonary circulation 20130901 3
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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.
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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.
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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.
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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.
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Project description:BackgroundPulmonary hypertension (PH) is a heterogeneous disease with a poor prognosis. Accurate risk stratification is essential for guiding treatment decisions in pulmonary arterial hypertension (PAH). Although various risk models have been developed for PAH, their comparative prognostic potential requires further exploration. Additionally, the applicability of risk scores in PH groups beyond group 1 remains to be investigated.Research questionAre risk scores originally developed for PAH predictive in PH groups 1 through 4?Study design and methodsWe conducted a comprehensive analysis of outcomes among patients with incident PH enrolled in the multicenter worldwide Pulmonary Vascular Research Institute GoDeep meta-registry. Analyses were performed across PH groups 1 through 4 and further subgroups to evaluate the predictive value of PAH risk scores, including the Registry to Evaluate Early and Long-Term PAH Disease Mangement (REVEAL) Lite 2, REVEAL 2.0, European Society of Cardiology/European Respiratory Society 2022, Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension (COMPERA) 3-strata, and COMPERA 4-strata.ResultsEight thousand five hundred sixty-five patients were included in the study, of whom 3,537 patients were assigned to group 1 PH, whereas 1,807 patients, 1,635 patients, and 1,586 patients were assigned to group 2 PH, group 3 PH, and group 4 PH, respectively. Pulmonary hemodynamics were impaired with median mean pulmonary arterial pressure of 42 mm Hg (interquartile range, 33-52 mm Hg) and pulmonary vascular resistance of 7 Wood units (WU) (interquartile range, 4-11 WU). All risk scores were prognostic in the entire PH population and in each of the PH groups 1 through 4. The REVEAL scores, when used as continuous prediction models, demonstrated the highest statistical prognostic power and granularity; the COMPERA 4-strata risk score provided subdifferentiation of the intermediate-risk group. Similar results were obtained when separately analyzing various subgroups (PH subgroups 1.1, 1.4.1, and 1.4.4; PH subgroups 3.1 and 3.2; group 2 with isolated postcapillary PH vs combined precapillary and postcapillary PH; patients of all groups with concomitant cardiac comorbidities; and severe [> 5 WU] vs nonsevere PH).InterpretationThis comprehensive study with real-world data from 15 PH centers showed that PAH-designed risk scores possess predictive power in a large PH cohort, whether considered as common to the group or calculated separately for each PH group (1-4) and various subgroups.Trial registryClinicalTrials.gov; No.: NCT05329714; URL: www.Clinicaltrialsgov.
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