Exploiting Distributed, Heterogeneous and Sensitive Data Stocks while Maintaining the Owner’s Data Sovereignty

2015 ◽  
Vol 54 (04) ◽  
pp. 346-352 ◽  
Author(s):  
M. Lablans ◽  
D. Kadioglu ◽  
M. Muscholl ◽  
F. Ückert
Keyword(s):  
Data Protection ◽  
Statistical Significance ◽  
Distributed Databases ◽  
Peer Pressure ◽  
National Registry ◽  
University Hospitals ◽  
Project Proposal ◽  
Federated Search ◽  
Explicit Consent ◽  
Patient Consent

SummaryBackground: To achieve statistical significance in medical research, biological or data samples from several bio- or databanks often need to be complemented by those of other institutions. For that purpose, IT-based search services have been established to locate datasets matching a given set of criteria in databases distributed across several institutions. However, previous approaches require data owners to disclose information about their samples, raising a barrier for their participation in the network.Objective: To devise a method to search distributed databases for datasets matching a given set of criteria while fully maintaining their owner’s data sovereignty.Methods: As a modification to traditional federated search services, we propose the decentral search, which allows the data owner a high degree of control. Relevant data are loaded into local bridgeheads, each under their owner’s sovereignty. Researchers can formulate criteria sets along with a project proposal using a central search broker, which then notifies the bridgeheads. The criteria are, however, treated as an inquiry rather than a query: Instead of responding with results, bridgeheads notify their owner and wait for his/her decision regarding whether and what to answer based on the criteria set, the matching datasets and the specific project proposal. Without the owner’s explicit consent, no data leaves his/ her institution.Results: The decentral search has been deployed in one of the six German Centers for Health Research, comprised of eleven university hospitals. In the process, compliance with German data protection regulations has been confirmed. The decentral search also marks the centerpiece of an open source registry software toolbox aiming to build a national registry of rare diseases in Germany.Conclusions: While the sacrifice of real-time answers impairs some use-cases, it leads to several beneficial side effects: improved data protection due to data parsimony, tolerance for incomplete data schema mappings and flexibility with regard to patient consent. Most importantly, as no datasets ever leave their institution, owners can reject projects without facing potential peer pressure. By its lower barrier for participation, a decentral search service is likely to attract a larger number of partners and to bring a researcher into contact with the right potential partners.

scholarly journals Record linkage of routine data with cohorts’ data of infants under European and Portuguese law

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
J Doetsch ◽  
I Lopes ◽  
R Redinha ◽  
H Barros
Keyword(s):  
Big Data ◽  
Data Processing ◽  
Data Protection ◽  
Record Linkage ◽  
Data Science ◽  
Personal Data ◽  
Routine Data ◽  
Cohort Data ◽  
Education Data ◽  
Explicit Consent

Abstract The usage and exchange of “big data” is at the forefront of the data science agenda where Record Linkage plays a prominent role in biomedical research. In an era of ubiquitous data exchange and big data, Record Linkage is almost inevitable, but raises ethical and legal problems, namely personal data and privacy protection. Record Linkage refers to the general merging of data information to consolidate facts about an individual or an event that are not available in a separate record. This article provides an overview of ethical challenges and research opportunities in linking routine data on health and education with cohort data from very preterm (VPT) infants in Portugal. Portuguese, European and International law has been reviewed on data processing, protection and privacy. A three-stage analysis was carried out: i) interplay of threefold law-levelling for Record Linkage at different levels; ii) impact of data protection and privacy rights for data processing, iii) data linkage process' challenges and opportunities for research. A framework to discuss the process and its implications for data protection and privacy was created. The GDPR functions as utmost substantial legal basis for the protection of personal data in Record Linkage, and explicit written consent is considered the appropriate basis for the processing sensitive data. In Portugal, retrospective access to routine data is permitted if anonymised; for health data if it meets data processing requirements declared with an explicit consent; for education data if the data processing rules are complied. Routine health and education data can be linked to cohort data if rights of the data subject and requirements and duties of processors and controllers are respected. A strong ethical context through the application of the GDPR in all phases of research need to be established to achieve Record Linkage between cohort and routine collected records for health and education data of VPT infants in Portugal. Key messages GDPR is the most important legal framework for the protection of personal data, however, its uniform approach granting freedom to its Member states hampers Record Linkage processes among EU countries. The question remains whether the gap between data protection and privacy is adequately balanced at three legal levels to guarantee freedom for research and the improvement of health of data subjects.

Revolving door syndrome: A new meaning for an old concept?

2011 ◽  
Vol 26 (S2) ◽  
pp. 1114-1114
Author(s):  
P. Garrido ◽  
C. Saraiva
Keyword(s):  
Health Care ◽  
Hospital Admissions ◽  
Strong Predictor ◽  
Statistical Significance ◽  
Revolving Door ◽  
Full Time ◽  
University Hospitals ◽  
Short Term ◽  
Care Services ◽  
Psychiatric Units

Introduction“Revolving Door Syndrome” is usually defined as a cyclical pattern of short-term readmissions to the psychiatric units of health care centers, by young adults with chronic psychiatric disorders. Concerning the actual politics in health care sistems, with sucessive budget cuts and reduction of full-time hospital beds, the authors' aim has been to identify the patients that enter into a vicious circle of being admitted to hospital, discharged, and admitted again, as well as the underlying psychosocial reasons.ObjectivesThe purpose of this study was to identify factors associated with short-term readmissions to psychiatric acute care services, with statistical significance, and clinical interest, within a portuguese sample.Material and methodsRetrospective cohort study, in which the medical records of patients admitted to Coimbra University Hospitals two or more times (with short-term readmissions) between January and December of 2009, were analysed for socio-demographic characteristics, psychiatric diagnostic, presence of comorbidities, number of hospital admissions within that year, psychofarmacological treatments and presence of social and familiar support.Results and conclusionsThe authors found that lack of social and familiar support is a strong predictor for “Revolving Door Syndrome”, as well as the presence of a chronic psychiatric disorder.

scholarly journals Substance Use: Prevalence, Pattern and Risk Factors among Undergraduate Students in a Tertiary Institution in Southwest Nigeria

2021 ◽  
Vol 33 (2) ◽  
pp. 83-99
Author(s):  
K.A. Durowade ◽  
O.E. Elegbede ◽  
G.B. Pius-Imue ◽  
A. Omeiza ◽  
M. Bello ◽  
...  
Keyword(s):  
Risk Factors ◽  
Substance Use ◽  
Secondary Education ◽  
Undergraduate Students ◽  
Statistical Significance ◽  
Public Health Problem ◽  
Peer Pressure ◽  
Civil Servant ◽  
P Value ◽  
Global Public Health

Background: Substance use is a global public health problem with increasing burden among university students. This study assessed the prevalence, pattern and risk factors of substance use among undergraduate students of Afe Babalola University, Ado-Ekiti, Nigeria.Methods: This was a cross-sectional study of undergraduate students of Afe Babalola University, Ado-Ekiti. A multi-stage sampling technique was used to select respondents. Data collection tool was a structured self-administered questionnaire. Data analysis was done using Statistical Package for the Social Sciences (SPSS) version 23. Statistical significance was set at p value <0.05Results: The respondents’ mean age was 19.5 ± 2.0 years and all 416 (100.0%) were aware of substance abuse. The prevalence of substance use was 299 (71.9%). Alcohol 133 (32.0%) and over-the-counter drugs (29.9%) were the two most commonly used substance. Being male (p=0.017) and in 400 level (p=0.047) were associated with substance use while curiosity 112 (37.5%), peer pressure 95 (31.8%) and school stress 85 (28.4%) were reasons given. Predictors of substance use were being a female (aOR: 2.54; 95% CI=1.89-3.66; p=0.011), civil servant mother (aOR: 5.75; 95% CI=1.90-17.4; p=0.002) and mother with secondary education (aOR: 5.27; 95% CI= 2.20- 12.65; p<0.001).Conclusion: There was high prevalence of substance use with curiosity, peer pressure and school stress being influencers of substance use among the study population. Predictors of substance use were being a female, civil servant mother and mother with secondary education. The University authority should institute measures to prevent access to alcohol and other substances by the students.

scholarly journals Healthcare Workers Infection Rate in the Era of Coronavirus Disease 2019 - in Tertiary Teaching Hospital

2021 ◽  
Vol 9 (A) ◽  
pp. 651-658
Author(s):  
Mona Mohiedden ◽  
Aml M. Said ◽  
Ahmed M. Ali ◽  
Mohammed M. Abdel Razik ◽  
Maha Ali Gad
Keyword(s):  
Healthcare Workers ◽  
Statistical Significance ◽  
Descriptive Analysis ◽  
Control Measures ◽  
University Hospitals ◽  
Cross Sectional ◽  
Infection Control Measures ◽  
Increased Risk ◽  
Tertiary Teaching ◽  
Potential Risk Factors

BACKGROUND: Healthcare workers (HCWs) are at the frontline defense against coronavirus disease 2019 (COVID-19) pandemic. AIM: The study aimed to describe the characteristics and appraise potential risk factors of COVID-19 transmission among HCWs who tested positive for severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) in one of Cairo University Hospitals. METHOD: Cross-sectional descriptive analysis of confirmed polymerase chain reaction (PCR) positive versus negative cases for COVID-19. RESULTS: Through March–June 2020, (145/846; 17%) suspected HCWs were tested for COVID-19 by PCR; out of them (70/145; 48.3%) were confirmed as positive, these positive cases represented (70/846; 8.3%) of all HCWs of the hospital. About 33% of confirmed COVID-19 positive HCWs acquired the infection from the healthcare while only (13/70; 19%) from community settings, and no clear exposure data were identified in (34/70; 48%) of cases. Most of symptomatic cases showed a positive PCR test for SARS-CoV-2 versus asymptomatic cases, p < 0.001. There was no statistical significance regarding gender, age, presence of comorbidity, workload or the type of acquisition. CONCLUSION: HCWs are at an increased risk of COVID-19 infection at the workplace. Strict implementation of infection control measures is of crucial role in preventing transmission of COVID-19 infection in health-care settings.

scholarly journals Data protection in biobanks from a practical point of view: what must be taken into account during set-up and operation?

2019 ◽  
Vol 43 (6) ◽  
pp. 301-309 ◽  
Author(s):  
Johannes Drepper
Keyword(s):  
Data Protection ◽  
Point Of View ◽  
Legal Form ◽  
State Laws ◽  
General Data Protection Regulation ◽  
Administrative Costs ◽  
Explicit Consent ◽  
Set Up ◽  
The Right ◽  
Implementation Of Standards

Abstract The European General Data Protection Regulation (GDPR) incorporates many of the principles of data protection that were already in force in the past. Insofar the data protection requirements for German biobanks have not fundamentally changed since the GDPR became applicable in May 2018. In detail, however, new and relevant requirements have been added. Due to many derogation clauses that allow national deviations, federal and state laws must also be taken into account in Germany, depending on the legal form of the biobank or the supporting institution, which increases the complexity in individual cases. Research-oriented biobanks can still rely on informed, voluntary and explicit consent from patients or test persons. Other legal bases are also possible in certain cases. The information and transparency requirements have increased with the DSGVO, which has led to higher administrative costs. However, a major problem existed before and continues to exist in clarifying how biobanks deal with the right to know and the right not to know of their subjects, how this is explained in advance and which policy can be implemented in the long term, also in the context of targeted recruitment for later studies. The complexity of the regulatory framework and the resulting demands on biobanks make the development and implementation of standards unavoidable. In addition, it is recommended that such infrastructures be centralised, professionalised and equipped with the necessary resources.

scholarly journals Risk Factors Associated with Statin-Associated Muscle Symptoms in Patients Attending a Specialized Regional Lipid Clinic

2021 ◽  
Vol 2021 ◽  
pp. 1-5
Author(s):  
M. K. Saeed ◽  
J. Shah ◽  
R. Damani ◽  
F. Rahman ◽  
P. Patel ◽  
...  
Keyword(s):  
Risk Factors ◽  
Logistic Regression ◽  
Statistical Significance ◽  
University Hospitals ◽  
Antihypertensive Medications ◽  
Factors Associated ◽  
Binomial Logistic Regression ◽  
Lipid Clinic ◽  
The Uk ◽  
Clinical Records

Background. Statin-associated muscle symptoms (SAMS) are the major side effects reported for statins. Data from previous studies suggest that 7–29% of patients on statin had associated muscle symptoms. In the UK, there is a lack of corresponding data on SAMS and factors associated with the development of SAMS. Objective. This analysis is aimed at establishing the prevalence of SAMS and identifying major contributory risk factors in patients attending a lipid clinic. Methods. Clinical records of 535 consecutive patients, who visited the lipid clinic in the University Hospitals of Leicester, were studied retrospectively between 2009 and 2012. SAMS were defined by the presence of muscle symptoms with two or more different statins. Patients who reported muscle symptoms to statin with one or no rechallenge were excluded. The association of SAMS with clinical characteristics such as age and BMI, sex, smoking, excess alcohol, comorbidities, and medications was tested for statistical significance. A binomial logistic regression model was applied to adjust for risk factors significantly associated with SAMS. Results. The prevalence of SAMS was found to be 11%. On unadjusted analysis, the mean age of patients who had SAMS was significantly higher than those without SAMS ( 59.4 ± 10.5 years vs. 50.3 ± 13.4 years, respectively, P < 0.001 ). Nonsmokers were more likely to develop SAMS in comparison to active smokers ( P = 0.037 ). Patients taking antihypertensive medications were more likely to develop SAMS ( P = 0.010 ). In binomial logistic regression analysis, only age was positively and significantly associated with SAMS after adjusting for other risk factors ( β = 0.054 , P = 0.001 ). Conclusion. To the best of our knowledge, this study is the largest cohort of patients with SAMS in the United Kingdom. Our data suggest that the prevalence of SAMS is 11% and increased age is a risk factor associated with the development of SAMS in our cohort of patients.

scholarly journals P005 Regulators of the guanylate cyclase pathway are potential novel markers of mucosal healing in IBD

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S131-S132
Author(s):  
L E Jeffery ◽  
U N Shivaji ◽  
D Zardo ◽  
A Acharjee ◽  
O M Nardone ◽  
...  
Keyword(s):  
Guanylate Cyclase ◽  
Biologic Therapy ◽  
Statistical Significance ◽  
Mucosal Healing ◽  
Endoscopic Examination ◽  
Response To Therapy ◽  
Response To Treatment ◽  
University Hospitals ◽  
Therapy Assessment ◽  
The Difference

Abstract Background Intestinal guanylate cyclase C (GC-C) present in epithelial cells has been shown to have a role in gut homeostasis. The downstream effects of activation of GC-C are due to production of cyclic-GMP. GC-C is encoded by the gene GUCY2C, mutations in which are implicated in Familial Diarrhoea Syndrome and noted as risk factors for Crohn’s disease. GUCY2C and its activator, GUCA2A have been shown to be downregulated in IBD. We hypothesised that regulation of this pathway might be important in remission and response to therapy. Methods Forty-four patients with IBD and 7 patients with polyps (controls) at University Hospitals Birmingham, UK were recruited under ethical consent. Relevant demographic and clinical data were extracted from the hospital EMR. All patients had disease activity recorded on endoscopic examination of mucosa and intestinal biopsies collected for analysis. Mucosal healing was defined as MES = 0 (UC) and SES-CD &lt;6 (CD). Of 44 patients, 14 had matched baseline and 12-week post-biologic therapy assessment and had tissues collected. Intestinal biopsies were analysed by 3’RNA-sequencing using the Illumina Nextseq sequencer. FASTQ files were generated through BaseSpace and reads de-multiplexed, trimmed, aligned, and quantified using the GeneGlobe (Qiagen) workflow. Expression was compared between groups using either Wilcoxon tests or Kruskal–Wallis with Dunn post-hoc analysis as appropriate. Results Expression of Guanylate cyclase activators GUCA2A and GUCA2B in patients who showed mucosal healing was equivalent to controls, but GUCA2A was down-regulated in those with active disease (non-healing) (p = 0.006). The same pattern was observed for transcriptional regulators of GUCY2C, including HNF4A (p = 0.0248) and CDX2 (0.0062). Correspondingly, GUCY2C was reduced in non-healing mucosa, although the difference was not significant (Figure 1). In patients who responded to biologic therapy, both GUCA2A (p = 0.0234) and GUCA2B (p = 0.0117) were increased at follow-up but no change was observed for those who did not respond. Change in GUCY2C expression did not reach statistical significance in either group, although an increase was observed for a large proportion of responders. Conclusion Our findings suggest that regulation of the Guanylate Cyclase pathway may be involved in the restoration of a stable mucosa in IBD and that expression of its regulators may be used to indicate response to treatment.

More than 80% of total knee replacements can last for 25 years

BMJ ◽  
2019 ◽  
pp. l5680 ◽  
Author(s):  
Rob Cook ◽  
Peter Davidson ◽  
Rosie Martin
Keyword(s):  
Meta Analysis ◽  
Case Series ◽  
National Registry ◽  
Research Centre ◽  
University Hospitals ◽  
Total Knee Replacements ◽  
Knee Replacements ◽  
Total Knee ◽  
University Of Bristol ◽  
The University

The studyEvans JT, Walker R, Evans W, Blom AW, Sayers A, Whitehouse MRHow long does a knee replacement last? A systematic review and meta-analysis of case series and national registry reports with more than 15 years of follow-up.Published on 16 February 2019 Lancet 2019;393:655-63This study was supported by the NIHR Biomedical Research Centre at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol.To read the full NIHR Signal, go to: https://discover.dc.nihr.ac.uk/content/signal-000776/more-than-80-of-total-knee-replacements-can-last-for-25-years

Comparing the Contribution of the Group to the Initial Idea in Progressive Idea Generation

2012 ◽  
Author(s):  
Bryan M. Blair ◽  
Katja Hölttä-Otto
Keyword(s):  
Statistical Analysis ◽  
Statistical Significance ◽  
Idea Generation ◽  
Peer Pressure ◽  
Entire Group ◽  
Innovative Products ◽  
Initial Idea ◽  
Group Members ◽  
Innovation Characteristics

Successful Idea Generation (IG) is more likely to lead to original and innovative products. It is usually recommended that idea generation is done in groups. Specifically, progressive idea generation methods, such as 6-3-5/C-Sketch, have been developed to gain from the benefits of group based ideation while being less subject to the peer pressure of a typical brainstorming session, where people can call out ideas simultaneously. In this study, we investigate the contributions that the group makes to the initial ideas in such progressive idea generation. Participants developed concepts for one of two products, namely alarm clocks or litter grabbers. Statistical analysis was used to compare the results of the initial ideas to the entire group for both products. Samples were rated at feature level using three metrics: originality, number of innovation characteristics hit, and feasibility. Results indicate that, in general, the originality and innovativeness of the initial concepts is improved by the rest of the group members. Non-original initial ideas were improved in all four sample groups. Highly original initial ideas also were improved in most cases. Feasibility was generally lowered, but not with statistical significance. Results from the perspective of particular product feature and innovation characteristic categories were varied; some more popular than others.

Data Protection Compliance in the Age of Digital Health

2016 ◽  
Vol 23 (3) ◽  
pp. 248-264 ◽  
Author(s):  
Victoria Hordern
Keyword(s):  
Mobile Technology ◽  
Data Protection ◽  
Digital Health ◽  
Health Data ◽  
Current Data ◽  
Smartphone Apps ◽  
Data Protection Directive ◽  
Explicit Consent ◽  
The Way

Advances in technology are transforming the way that health data is collected and used. This includes improvements in existing technology as well as innovations in mobile technology such as smartphone apps and wearables. Health data is strictly regulated under the eu Data Protection Directive 95/46/ec. Under current data protection rules, health data is broadly interpreted and will, in most circumstances not connected to the provision of healthcare, require organisations to obtain explicit consent from individuals for its collection and use. Further data protection compliance issues arise such as identifying who is a controller, ensuring transparency, using health data for research purposes and keeping health data secure. As the eu data protection landscape is due to change in the next few years and will affect the collection and use of health data, the forthcoming Data Protection Regulation also deserves attention.

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