Overview of ILSAs and Aspects of Data Reuse

2021 ◽  
pp. 1-26
Author(s):  
Nathalie Mertes
Keyword(s):  
Data Reuse

Assessing the Legal and Ethical Impact of Data Reuse:

2019 ◽  
Vol 5 (3) ◽  
pp. 317-337
Author(s):  
B. Custers ◽  
H. U Vrabec ◽  
M. Friedewald
Keyword(s):  
Data Reuse

scholarly journals Citizens, Research Ethics Committee Members and Researchers’ Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems

2021 ◽  
pp. 155626462199221
Author(s):  
Annabelle Cumyn ◽  
Roxanne Dault ◽  
Adrien Barton ◽  
Anne-Marie Cloutier ◽  
Jean-François Ethier
Keyword(s):  
Research Ethics ◽  
Health Systems ◽  
Ethics Committee ◽  
Health Data ◽  
Data Reuse ◽  
Fundamental Importance ◽  
Research Ethics Committee ◽  
Secondary Use ◽  
Public Perspectives ◽  
Advance Knowledge

A survey was conducted to assess citizens, research ethics committee members, and researchers’ attitude toward information and consent for the secondary use of health data for research within learning health systems (LHSs). Results show that the reuse of health data for research to advance knowledge and improve care is valued by all parties; consent regarding health data reuse for research has fundamental importance particularly to citizens; and all respondents deemed important the existence of a secure website to support the information and consent processes. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models for health data reuse to take into consideration the unique features of LHSs. The revised model will need to ensure that citizens are given the opportunity to be better informed about upcoming research and have their say, when possible, in the use of their data.

scholarly journals Ethical Issues in Consent for the Reuse of Data in Health Data Platforms

2021 ◽  
Vol 27 (1) ◽  
Author(s):  
Alex McKeown ◽  
Miranda Mourby ◽  
Paul Harrison ◽  
Sophie Walker ◽  
Mark Sheehan ◽  
...  
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Data Reuse ◽  
Remote Access ◽  
Risk Indicators ◽  
New Paradigm ◽  
The Social ◽  
New Thinking ◽  
The Relationship

AbstractData platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.

Technical Perspective: Building a safety net for data reuse

2017 ◽  
Vol 60 (4) ◽  
pp. 85-85 ◽  
Author(s):  
Jonathan Ullman
Keyword(s):  
Safety Net ◽  
Data Reuse

scholarly journals The secondary use and linking of health administrative and clinical trial data in cancer: attitudes towards data reuse in Australia

The Breast ◽  
2021 ◽  
Vol 56 ◽  
pp. S84
Author(s):  
E. Hutchings ◽  
B.E. Butcher ◽  
P. Butow ◽  
F.M. Boyle
Keyword(s):  
Clinical Trial ◽  
Clinical Trial Data ◽  
Trial Data ◽  
Data Reuse ◽  
Secondary Use

A framework for enhancing data reuse via associative reordering

2014 ◽  
Vol 49 (6) ◽  
pp. 65-76 ◽  
Author(s):  
Kevin Stock ◽  
Martin Kong ◽  
Tobias Grosser ◽  
Louis-Noël Pouchet ◽  
Fabrice Rastello ◽  
...  
Keyword(s):  
Data Reuse

scholarly journals Update on Data Reuse in Health Care

2017 ◽  
Vol 26 (01) ◽  
pp. 24-27 ◽  
Author(s):  
C. Safran
Keyword(s):  
Clinical Data ◽  
Legal Framework ◽  
Data Reuse ◽  
Policy Initiatives ◽  
Clinical Databases ◽  
Real World Evidence ◽  
Policy Frameworks ◽  
Potential Risks ◽  
Barriers To Use

Summary Objective: Reuse of clinical data has broad use in clinical, research, governmental, and business settings. This summary provides an update on the benefits, barriers to use with large clinical databases, policy frameworks that have been formulated, and challenges. Methods: This report highlights some recent publications on the diverse uses of clinical data and some policy initiatives to promote reuse. It also contains the opinions of the author. Results: Although many examples of the benefits of data reuse have been documented, this summary also reviews why the quality of clinical data needs to be the focus of future informatics work. Conclusion: The promise of reusing data outweighs potential risks, but concerns about privacy and the need to modernize our legal framework will be necessary to realize the full benefits of real-world evidence.

scholarly journals IPCC Sixth Assessment approaches towards FAIR data and an enhanced data reuse

2020 ◽  
Author(s):  
Martina Stockhause ◽  
Alaa Al Khourdajie ◽  
Andres Alegria ◽  
Robert Chen ◽  
David Huard ◽  
...  
Keyword(s):  
Data Reuse

scholarly journals The World Checklist of Vascular Plants, a continuously updated resource for exploring global plant diversity

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Rafaël Govaerts ◽  
Eimear Nic Lughadha ◽  
Nicholas Black ◽  
Robert Turner ◽  
Alan Paton
Keyword(s):  
Plant Diversity ◽  
Vascular Plants ◽  
Sustainable Use ◽  
Data Reuse ◽  
Global Biodiversity Information Facility ◽  
Full Dataset ◽  
The World ◽  
Technical Validation ◽  
International Data ◽  
Data Collation

AbstractThe World Checklist of Vascular Plants (WCVP) is a comprehensive list of scientifically described plant species, compiled over four decades, from peer-reviewed literature, authoritative scientific databases, herbaria and observations, then reviewed by experts. It is a vital tool to facilitate plant diversity research, conservation and effective management, including sustainable use and equitable sharing of benefits. To maximise utility, such lists should be accessible, explicitly evidence-based, transparent, expert-reviewed, and regularly updated, incorporating new evidence and emerging scientific consensus. WCVP largely meets these criteria, being continuously updated and freely available online. Users can browse, search, or download a user-defined subset of accepted species with corresponding synonyms and bibliographic details, or a date-stamped full dataset. To facilitate appropriate data reuse by individual researchers and global initiatives including Global Biodiversity Information Facility, Catalogue of Life and World Flora Online, we document data collation and review processes, the underlying data structure, and the international data standards and technical validation that ensure data quality and integrity. We also address the questions most frequently received from users.

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