Rebelling with Care.:Exploring open technologies for commoning healthcare

The publication Rebelling with Care is the result of the research and dissemination activities carried out by WeMake within the framework of DSI for Europe, a project supported by the European Commission to reinforce the network of organizations using technologies to make a positive impact on society. The DSI paradigm revolves around key concepts such as open codes and data, co-design, collaboration and social impact. Since January 2018, we have reflected upon the traction these terms could have specifically in the field of health and care practices, starting with a map of the current DSI ecosystem and an informal learning journey that has involved citizens, policy-makers, professionals and institutions. What does it mean to develop bottom-up innovation, which is community-driven and built upon the commons, in a sector that is struggling to meet the needs of a growing and aging society, that is ruled by obsolete bureaucracies, and that is limited by proprietary technologies and top-down procedures? We have tried to answer these questions through seven articles and seven practices that show in concrete terms the contours of the emerging and diverse new modalities of dealing with the health and care challenges of today by leveraging the empowering potential of digital technologies. In the context of this research, we came to define these different modalities, which often emerge from the strong personal needs of the people directly impacted by a specific condition, as “rebel practices”. This is because in the vast majority of cases, these practices simultaneously operate outside a market logic without asking for the full permission of official institutions, with the purpose of provoking them to change or filling the gap left by who do not innovate, with due care, in the fields of health and care provisions

Cure Ribelli. Tecnologie aperte per una cura come bene comune

Cure Ribelli è una pubblicazione che nasce dalle attività di ricerca e disseminazione svolte da WeMake nell’ambito del progetto Digital Social Innovation for Europe, un programma supportato dalla Commissione Europea che punta a rafforzare la rete di organizzazioni che propongono l’utilizzo delle tecnologie con una prospettiva mirata all’impatto positivo sulla società. I concetti chiave del paradigma dell’innovazione sociale digitale gravitano intorno a termini quali codici e dati aperti, co-progettazione, collaborazione, impatto sociale. Dal gennaio 2018 abbiamo riflettuto e ci siamo confrontate sulla declinazione di tali concetti nell’ambito della cura e della salute a partire da una mappatura del contesto e da un percorso formativo informale che ha coinvolto cittadini, referenti politici, professionisti e istituzioni. Che cosa significa sviluppare un’innovazione dal basso guidata dalla comunità e fondata sui beni comuni, in un settore impreparato al crescente invecchiamento della popolazione, governata da burocrazie obsolete, e che è limitata da tecnologie proprietarie e procedure verticistiche? Abbiamo cercato di rispondere a queste domande attraverso sette articoli e sette pratiche progettuali che danno concretamente forma ad altri e nuovi modi di fare cura e occuparsi della salute sfruttando il potenziale emancipatorio delle tecnologie digitali. Nell’ambito di questa ricerca, abbiamo voluto definire questi altri modi “ribelli” poiché spesso nascono da forti esigenze personali delle persone direttamente interessate che, nella maggior parte dei casi, agiscono senza chiedere il permesso di mercati e istituzioni, per provocarli al fine di farli cambiare o per sopperire alle carenze di chi dovrebbe ma non innova, con cura, il settore della salute

Cure Ribelli. Tecnologie aperte per una cura come bene comune.

Cure Ribelli è una pubblicazione che nasce dalle attività di ricerca e disseminazione svolte da WeMake nell’ambito del progetto Digital Social Innovation for Europe, un programma supportato dalla Commissione Europea che punta a rafforzare la rete di organizzazioni che propongono l’utilizzo delle tecnologie con una prospettiva mirata all’impatto positivo sulla società. I concetti chiave del paradigma dell’innovazione sociale digitale gravitano intorno a termini quali codici e dati aperti, co-progettazione, collaborazione, impatto sociale. Dal gennaio 2018 abbiamo riflettuto e ci siamo confrontate sulla declinazione di tali concetti nell’ambito della cura e della salute a partire da una mappatura del contesto e da un percorso formativo informale che ha coinvolto cittadini, referenti politici, professionisti e istituzioni. Che cosa significa sviluppare un’innovazione dal basso guidata dalla comunità e fondata sui beni comuni, in un settore impreparato al crescente invecchiamento della popolazione, governata da burocrazie obsolete, e che è limitata da tecnologie proprietarie e procedure verticistiche? Abbiamo cercato di rispondere a queste domande attraverso sette articoli e sette pratiche progettuali che danno concretamente forma ad altri e nuovi modi di fare cura e occuparsi della salute sfruttando il potenziale emancipatorio delle tecnologie digitali. Nell’ambito di questa ricerca, abbiamo voluto definire questi altri modi “ribelli” poiché spesso nascono da forti esigenze personali delle persone direttamente interessate che, nella maggior parte dei casi, agiscono senza chiedere il permesso di mercati e istituzioni, per provocarli al fine di farli cambiare o per sopperire alle carenze di chi dovrebbe ma non innova, con cura, il settore della salute

Genetic alterations analysis in prognostic stratified groups identified TP53 and ARID1A as poor clinical performance markers in intrahepatic cholangiocarcinoma

The incidence and mortality rates of intrahepatic cholangiocarcinoma have been rising worldwide. Few patients present an early-stage disease that is amenable to curative surgery and after resection, high recurrence rates persist. To identify new independent marker related to aggressive behaviour, two prognostic groups of patient were selected and divided according to prognostic performance. All patients alive at 36 months were included in good prognostic performers, while all patients died due to disease within 36 months in poor prognostic performers. Using high-coverage target sequencing we analysed principal genetic alterations in two groups and compared results to clinical data. In the 33 cases included in poor prognosis group, TP53 was most mutated gene (p\u2009=\u20090.011) and exclusively present in these cases. Similarly, ARID1A was exclusive of this group (p\u2009=\u20090.024). TP53 and ARID1A are mutually exclusive in this study. Statistical analysis showed mutations in TP53 and ARID1A genes and amplification of MET gene as independent predictors of poor prognosis (TP53, p\u2009=\u20090.0031, ARID1A, p\u2009=\u20090.0007, MET, p\u2009=\u20090.0003 in Cox analysis). LOH in PTEN was also identified as marker of disease recurrence (p\u2009=\u20090.04) in univariate analysis. This work improves our understanding of aggressiveness related to this tumour type and has identified novel prognostic markers of clinical outcome

True 3q Chromosomal Amplification in Squamous Cell Lung Carcinoma by FISH and aCGH Molecular Analysis: Impact on Targeted Drugs

Peer reviewe

High familial burden of cancer correlates with improved outcome from immunotherapy in patients with NSCLC independent of somatic DNA damage response gene status

Family history of cancer (FHC) is a hallmark of cancer risk and an independent predictor of outcome, albeit with uncertain biologic foundations. We previously showed that FHC-high patients experienced prolonged overall (OS) and progression-free survival (PFS) following PD-1/PD-L1 checkpoint inhibitors. To validate our findings in patients with NSCLC, we evaluated two multicenter cohorts of patients with metastatic NSCLC receiving either first-line pembrolizumab or chemotherapy. From each cohort, 607 patients were randomly case-control matched accounting for FHC, age, performance status, and disease burden. Compared to FHC-low/negative, FHC-high patients experienced longer OS (HR 0.67 [95% CI 0.46-0.95], p\u2009=\u20090.0281), PFS (HR 0.65 [95% CI 0.48-0.89]; p\u2009=\u20090.0074) and higher disease control rates (DCR, 86.4% vs 67.5%, p\u2009=\u20090.0096), within the pembrolizumab cohort. No significant associations were found between FHC and OS/PFS/DCR within the chemotherapy cohort. We explored the association between FHC and somatic DNA damage response (DDR) gene alterations as underlying mechanism to our findings in a parallel cohort of 118 NSCLC, 16.9% of whom were FHC-high. The prevalence of\u2009 65\u20091 somatic DDR gene mutation was 20% and 24.5% (p\u2009=\u20090.6684) in FHC-high vs. FHC-low/negative, with no differences in tumor mutational burden (6.0 vs. 7.6 Mut/Mb, p\u2009=\u20090.6018) and tumor cell PD-L1 expression. FHC-high status identifies NSCLC patients with improved outcomes from pembrolizumab but not chemotherapy, independent of somatic DDR gene status. Prospective studies evaluating FHC alongside germline genetic testing are warranted

Sport and physical activity

A regular sport activity involves physical and psychological benefits helping to improve the quality of life at any age. This aspect is even more important in the developing age, when the sport takes on a role of training and education. In this context, instances directed to allow adolescent and young adults with heart disease to practice sports seem justified, and they're becoming more pressing since when the diagnostic and therapeutic advances, especially in cardiac surgery and in interventional hemodynamics, allow an increasing number of patients, previously allocated to physical inactivity, to lead an active lifestyle. However, we have to keep in mind that congenital heart disease population is varied, not only by the nature of the malformation, but also because in the same cardiopathy you can find subjects in "natural history" or after surgery and, between them, subjects treated with several techniques and different outcomes. This justifies the need for a close collaboration between sports doctors, cardiologists and heart surgeons, particularly in the management of the most difficult and delicate problem

Different presentation of bicuspid aortic valve in 169 sportsmen.

OBJECTIVE Bicuspid aortic valve (BAV) is the most common congenital cardiac anomaly (1-2%) in the general population. Aims of our study were: 1) to evaluate the different patterns of presentation of BAV; 2) to compare different BAV morphological phenotypes. METHODS Since 1986 to 2009, 169 sportsmen with BAV (mean age 22\ub110.4, range 7-67 years), were evaluated for different reasons in our Institution. Each subject underwent a thorough cardiological evaluation comprehensive of clinical examination, resting and exercise ECG, echocardiogram, 24h-Holter monitoring and, when indicated, magnetic resonance imaging of the heart and/or angio-CT of coronary arteries. RESULTS BAV was associated with cardiac pathologies/abnormalities in 46/169 (27%) sportsmen. After excluding subjects with significant cardiac pathologies (10 cases), aged 50 years (8 cases), the remaining 151 were classified in 4 groups: group 0, (22 cases, 14.6%) with an \u201calmost normal valve\u201d; group 1, (94 subjects, 62.2%) with regurgitation; group 2, (16 cases, 10.6%) with stenosis; group 3, (19 subjects, 12.6%) with isolated aortic dilation. Moreover, taking into account BAV morphology, 109 cases (72.2%) showed antero-posteriorly (AP) and 42 (27.8%) latero-laterally (LL) oriented cusps. Sportsmen with AP-BAV showed larger aortic diameter (34.7\ub15.9 vs 31.7\ub16.1) and a greater proneness to progressive dilation during follow-up (+0.04\ub10.08 vs +0.02\ub10.05 mm/year). DISCUSSION & CONCLUSION As other cardiac pathologies/abnormalities are frequently observed in sportsmen with BAV, a thorough cardiological investigation must always be carried out. Several patterns of BAV presentation exist, possibly with different outcome. Valve morphology, finally, seems to be a predictive factor for its prognosis

The identification of a small but significant subset of patients still targetable with anti-HER2 inhibitors when affected by triple negative breast carcinoma

Purpose: Triple (ER-, PR-, HER2-) negative breast carcinoma lack targeted therapies, making this group of tumors difficult to treat. By definition, the lack of HER2 expression means a case scoring 0 or 1+ after immunophenotypical analysis and makes the patients avoiding therapeutical chances with anti-HER2 inhibitors. We sought to recruit from a group of triple negative breast carcinoma, patients eligible for effective personalized targeted therapy with anti-HER therapies on the basis of their HER2 gene status. Methods: 135 patients diagnosed with IHC triple negative breast carcinoma were studied. Whole tissue sections were used for in situ hybridization analysis. Results: 8/100 (8 %) of ductal-type triple negative breast carcinoma presented Her-2/neu gene amplification versus 2/35 (5.7 %) non-ductal triple negative breast carcinoma. Three cases showed a ratio 2.5. One case showed Her-2/neu heterogeneous gene amplification, ratio 2.3. The other six showed from 7 to 8 absolute Her-2/neu gene copy number. Two cases staged pT1c, and eight cases staged pT2. Eight cases graded G3 and two cases G2. Conclusion: (1) Eight percentage of ductal and 5.7 % non-ductal-type triple negative breast carcinoma present Her-2/neu gene amplification, (2) the standard diagnostic flowchart “do not FISH in 0–1+ (HER2-) breast carcinoma” should be replaced by “do FISH in triple (ER-, PR-, HER2-) negative breast carcinoma,” to avoid loss of therapeutical chances in a cohort of such a patients, (3) we demonstrated the identification of a small but significant subset of patients targetable with anti-HER2 inhibitors, giving patients affected by (ex)triple negative breast carcinoma new personalized therapeutical chances

Prevalence and clinical significante of negative T waves in sportsmen: a retrospective study.

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