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The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting. ; SOMD is supported by the Canadian Institutes of Health Research (EP1-120608; EP1-120609; CEE-151618), Genome Quebec, Genome Canada, the Government of Canada, the Ministère de l'Économie, Innovation et Exportation du Québec (Can-SHARE grant 141210), and the Canada Research Chair in Law and Medicine. ML, IL, JT, and TN are supported by the ELIXIR, the research infrastructure for life-science data, and the H2020 ELIXIR-EXCELERATE grant 676559. IL and GK are supported by the European Molecular Biology Laboratory; MS by Research Foundation Flanders (FWO); MH by NIH/NHGRI 5U41HG002371-15; SW by NIH/NHGRI R00HG008175; S Beck by the National Institute for Health Research UCLH Biomedical Research Centre (BRC369/CN/SB/101310); S Brenner by NIH/NHGRI U41 HG007346; BMK by the Canada Research Chair in Law and Medicine; and PF by WT201535/Z/16/Z and the European Molecular Biology Laboratory.

This article considers calls for data transparency as research regulation and accountability. Rather than arguing for or against the value of sharing data, the article argues that understanding the call for data sharing requires questioning assumptions embedded in the debate about the context of scholarship and rethinking the purposes of data access. The article first argues that the spread of information available digitally means that researchers in the academy and outside it work with digital information, quite apart from mandates for data access. Second, replication as an accountability measure is often offered as one reason for making data available. However, scholars of replication have argued that replication has multiple components, many difficult to enact. Demands in universities for grant funding, impact by standard metrics, and newsworthy research encourage rapidly produced scholarship and research that makes big innovative claims. However, replication imposed sporadically cannot regularly counter these systematic incentives. If one purpose of data access is to regulate the research enterprise, scholarship on regulatory strategies and the difficulty of accomplishing goals via mandates illuminates the call for data access. Replication operates as a threat, one seen to generate incentives for good science, but is erratically enforced. Borrowing from the scholarship of audit and regulation, the article uses regulation, including audit, as accountability to argue that the sciences might need to address fundamental concerns about trust.

With legal frameworks changing, administrative data can increasingly be utilised both for official statistics and to facilitate new research, enabling the development of evidence-based policy for the public benefit. Secure access conditions generally apply to using these rich, highly detailed data. However, using data from various sources is difficult when they are fragmented in "silos" between several Research Data Centres (RDCs) as can happen at a national level, and is very likely to be the case at an international level. This is a major obstacle for international comparative research. Based on user consultations, on discussions with international organisations such as OECD and Eurostat and based on lessons learned from projects as, "Data without Boundaries" and the "Nordic Microdata Access Network", IDAN aims to create a concrete operational international framework enabling access to controlled data for research. IDAN, founded in 2018, involves six RDCs from France, Germany, the Netherlands and the United Kingdom. Initially, the partners' access systems are being implemented in each partners' premise based on bilateral agreements. This process involves combining requirements of security and surveillance for Safe Rooms, thus paving the way for next steps toward an integrated RDCs network. This presentation will describe how IDAN is setting up a new concrete environment for researchers to work remotely with data from the other partners within their local RDC. The paper will present first project developments, lessons and impact for research that are also of interest for national contexts where administrative data are held in multiple data centres.

BackgroundAs commissioners of the National Clinical Audit and Patient Outcomes Programme (NCAPOP), HQIP are custodians of data from across many areas of healthcare. The high quality and national coverage of circa 40 national audits and registries means datasets are sought after for many purposes.
IntroductionHQIP values placing patients and the public at the heart of our work. We wanted to work with members of our Service User Network (SUN) to research and design how to recruit and sustain public representation in our Data Access Request Group (DARG).
Our primary objective was to work in partnership with public members to co-design a sustainable model that implements meaningful public involvement within DARG.
Our intended outcomes were that HQIP is enabled to establish public membership in DARG, and that HQIP's Data Access processes benefit from the added supportive challenge and assurance that public membership provides.
MethodsWe took the following steps to achieve our aims:

Recruited 3 public members to our project team from our SUN enabling us to have meaningful public involvement throughout.Public members contributed to discussions with other organisations with established public membership on their data access committees (IGARD, CPRD, Pioneer) and HDRUK, to gather knowledge on best practice in public engagement with data access processes.
Fortnightly team meetings to review progress, develop a model for public membership in DARG, and reflect on learnings throughout.
Invited our public members to observe a DARG meeting to better understand how our data access processes work, and followed this up with a Q&A session.
Our PPI lead actively supported public members throughout the project, enabling them to self-select how they wanted to contribute, and encouraging them to bring learning from other PPI work they have been involved with.

ResultsOur project outputs included:

A costed business case for establishing public membership within DARG: for HQIP reviewRecruitment resources: promotional materials, role description for public members, public involvement agreement, draft interview tasks and questions
DARG operating model: amended DARG Terms of Reference, Glossary of terms
Co-designed webpages: on HQIP's Data Access Processes; inclusion of the Five Safes Framework
Supporting infographics: to visually display webpage content

ConclusionsThis project had the following impact and gave the following insights:

HQIP approval given for establishing public membership onto DARG
Improved public accessibility and understanding of HQIP's data access processes
Clearer roles and responsibilities of DARG members
A platform within DARG to promote the patient and public voice
Learning for HQIP as it was the first-time public members were part of a project team – this brought diversity, new ideas, and challenge
Public project members more confident to challenge and question professionals in other settings

It presents research data access and management initiatives in Argentina. The Database National Systems initiative by the Ministry of Science, Technology and Productive Innovation (MINCyT) includes the National System of Biological Data, the National System of Sea Data, the National System of Digital Repositories, and the National System of Climate Data. Research data access and management legislation was promoted by MINCyT and it is now being discussed by Argentinean Congress. The National Council of Scientific and Technological Research is developing the Interactive Platform for Social Sciences Research to create an appropriate environment for data sharing, to allow interdisciplinary approaches and to contribute to the understating of complex problems. National University of Rosario is conducting a study to learn researchers´ needs regarding repository services for data management and access. ; Fil: Bongiovani, Paola Carolina. Universidad Nacional de Rosario; Argentina

IntroductionThe current data access model in BC involves project-specific applications and data provisioning. The timeline from application to provisioning is 6-8 months. Novel initiatives including Program of Research (POR), Core Data Sets (CORE), and Data Reuse are being explored and evaluated.
Objectives and ApproachWe aim to develop data provisioning models that improve efficiency and access timelines by reducing process duplication and adopting open and flexible approaches to data use while ensuring data privacy.
ResultsPOR allows researchers to access broad programmatic data that fulfills data requirements for multiple thematically-linked projects. While we provision the program data, a research team data manager extracts the project-specific data from the program dataset. A pilot program with two active projects is ongoing. The timeline from application to program data provisioning was 8 months. Project data was delivered in 2-3 months.
CORE is a transformative data provisioning model that allows researchers to access entire data sets that contain a group of pre-approved and non-sensitive data variables for the BC population for all available years. This decreases the possibility of variable omission which is prevalent under the existing process. Additionally, this model allows researchers the flexibility to identify their cohort using their preferred methodology.
Data Reuse allows re-use of data between similar projects conducted by the same investigator. Projects were surveyed for similar objectives, investigators and data requirements. Similar projects were grouped and analyzed to evaluate pre-implementation timelines. Application to provisioning timeline for one group of six projects ranged from 7-18 months. Post-implementation timelines will be evaluated once Data Reuse is implemented.
Conclusion / ImplicationsThese new initiatives have shown promising results in access efficiency and data privacy in the pilot phase. Continuous process and privacy evaluations are involved and ongoing collaborations with the data providers and researchers are required prior to full implementation.

We present performance data relating to the use of migration in a system we are creating to provide web access to heterogeneous document collections in legacy formats. Our goal is to enable sustained access to collections such as these when faced with increasing obsolescence of the necessary supporting applications and operating systems. Our system allows searching and browsing of the original files within their original contexts utilizing binary images of the original media. The system uses static and dynamic file migration to enhance collection browsing, and emulation to support both the use of legacy programs to access data and long-term preservation of the migration software. While we provide an overview of the architectural issues in building such a system, the focus of this paper is an in-depth analysis of file migration using data gathered from testing our software on 1,885 CD-ROMs and DVDs. These media are among the thousands of collections of social and scientific data distributed by the United States Government Printing Office (GPO) on legacy media (CD-ROM, DVD, floppy disk) under the Federal Depository Library Program (FDLP) over the past 20 years.

Social scientists increasingly expect to have access to detailed data for research purposes. As the level of detail increases, data providers worry about "spontaneous recognition", the likelihood that a microdata user believes that he or she has accidentally identified one of the data subjects in the dataset, and may share that information. This concern, particularly in respect of microdata on businesses, leads to excessive restrictions on data use. We argue that spontaneous recognition presents no meaningful risk to confidentiality. The standard models of deliberate attack on the data cover re-identification risk to an acceptable standard under most current legislation. If spontaneous recognition did occur, the user is very unlikely to be in breach of any law or condition of access. Any breach would only occur as a result of further actions by the user to confirm or assert identity, and these should be seen as a managerial problem. Nevertheless, a consideration of spontaneous recognition does highlight some of the implicit assumptions made in data access decisions. It also shows the importance of the data provider's culture and attitude. For data providers focused on users, spontaneous recognition is a useful check on whether all relevant risks have been addressed. For data providers primarily concerned with the risks of release, it provides a way to place insurmountable barriers in front of those wanting to increase data access. We present a case study on a business dataset to show how rejecting the concept of spontaneous recognition led to a substantial change in research outcomes.

Summarization: This paper uses argumentation as the basis for modeling and implementing the relevant legislation of an EU country relating to medical data access. Users can consult a web application for determining their allowed level of access to a patient's medical record and are offered an explanation based on the relevant legislation. The system can also advise a user on what additional information is required for a higher access level. The system is currently in the process of an extensive evaluation through a pilot trial with a special focus group of medical professionals. The development methodology that we have used is generally applicable to any other similar cases of decision making based on legislative regulations. The main advantage of using argumentation is the ability to explain the solutions drawn and the high modularity of software facilitating the extension and adaptation of the system when new relevant legislation becomes available. ; Παρουσιάστηκε στο: 30th International Conference on Industrial, Engineering, and Other Applications of Applied Intelligent Systems

Access to data is an obvious requirement for data-driven innovation, but many innovators struggle to access the data they need. In a recent CDEI survey, 86% of vendors of AI and data-driven technologies stated that a number of data-related factors …

Datenzugang kommt zentrale Bedeutung für die Datenwirtschaft und die Förderung zahlreicher Gemeinwohlbelange zu. Vor diesem Hintergrund stellt sich der Sammelband der Herausforderung, Ansätze für zukünftige Datenzugangsregeln zu entwickeln. Die Beiträge erhellen zunächst die ökonomische sowie rechtspolitische Rechtfertigung solcher Regeln. Sodann untersuchen sie unter Berücksichtigung der verfassungsrechtlichen Vorgaben und bereits bestehender Regelungen das Potenzial unterschiedlicher Rechtsgebiete (Kartell- und Vertragsrecht, Datenschutz- und Verbraucherrecht sowie sektorspezifische Regulierung) für die Gestaltung des zukünftigen Rechtsrahmens. Dabei wird auch der Notwendigkeit Rechnung getragen, Datenzugangsregeln mit dem Immaterialgüterrecht abzustimmen und in umfassendere Maßnahmepakete (Data Governance) einzubetten. Ebenso werden Regeln zur Durchsetzung des Interesses des Staates an privaten Daten sowie Datenzugangsansprüche der Nutzer vernetzter Geräte diskutiert.