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Literature DB >> 23253606

To share or not to share: that is not the question.

Abstract

There is an increasing awareness of the power of integrating multiple sources of data to accelerate biomedical discoveries. Some even argue that it is unethical not to share data that could be used for the public good. However, the challenges involved in sharing clinical and biomedical data are seldom discussed. I briefly review some of these challenges and provide an overview of how they are being addressed by the scientific community.

Mesh：

Year: 2012 PMID： 23253606 DOI： 10.1126/scitranslmed.3004454

Source DB: PubMed Journal: Sci Transl Med ISSN： 1946-6234 Impact factor: 17.956

Keyword Cloud
Cited

16 in total

1. Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.

Authors: Katherine K Kim; Dennis K Browe; Holly C Logan; Roberta Holm; Lori Hack; Lucila Ohno-Machado
Journal: J Am Med Inform Assoc Date: 2013-12-03 Impact factor: 4.497

Review 2. "Big data" and the electronic health record.

Authors: M K Ross; W Wei; L Ohno-Machado
Journal: Yearb Med Inform Date: 2014-08-15

3. Connectivity of diagnostic technologies: improving surveillance and accelerating tuberculosis elimination.

Authors: E Andre; C Isaacs; D Affolabi; R Alagna; D Brockmann; B C de Jong; E Cambau; G Churchyard; T Cohen; M Delmee; J-C Delvenne; M Farhat; A Habib; P Holme; S Keshavjee; A Khan; P Lightfoot; D Moore; Y Moreno; Y Mundade; M Pai; S Patel; A U Nyaruhirira; L E C Rocha; J Takle; A Trébucq; J Creswell; C Boehme
Journal: Int J Tuberc Lung Dis Date: 2016-08 Impact factor: 2.373

4. Why Is the Electronic Health Record So Challenging for Research and Clinical Care?

Authors: John H Holmes; James Beinlich; Mary R Boland; Kathryn H Bowles; Yong Chen; Tessa S Cook; George Demiris; Michael Draugelis; Laura Fluharty; Peter E Gabriel; Robert Grundmeier; C William Hanson; Daniel S Herman; Blanca E Himes; Rebecca A Hubbard; Charles E Kahn; Dokyoon Kim; Ross Koppel; Qi Long; Nebojsa Mirkovic; Jeffrey S Morris; Danielle L Mowery; Marylyn D Ritchie; Ryan Urbanowicz; Jason H Moore
Journal: Methods Inf Med Date: 2021-07-19 Impact factor: 1.800

5. A system to build distributed multivariate models and manage disparate data sharing policies: implementation in the scalable national network for effectiveness research.

Authors: Daniella Meeker; Xiaoqian Jiang; Michael E Matheny; Claudiu Farcas; Michel D'Arcy; Laura Pearlman; Lavanya Nookala; Michele E Day; Katherine K Kim; Hyeoneui Kim; Aziz Boxwala; Robert El-Kareh; Grace M Kuo; Frederic S Resnic; Carl Kesselman; Lucila Ohno-Machado
Journal: J Am Med Inform Assoc Date: 2015-07-03 Impact factor: 4.497

6. pSCANNER: patient-centered Scalable National Network for Effectiveness Research.

Authors: Lucila Ohno-Machado; Zia Agha; Douglas S Bell; Lisa Dahm; Michele E Day; Jason N Doctor; Davera Gabriel; Maninder K Kahlon; Katherine K Kim; Michael Hogarth; Michael E Matheny; Daniella Meeker; Jonathan R Nebeker
Journal: J Am Med Inform Assoc Date: 2014-04-29 Impact factor: 4.497

To share or not to share: that is not the question.

1. Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.

Review 2. "Big data" and the electronic health record.

3. Connectivity of diagnostic technologies: improving surveillance and accelerating tuberculosis elimination.

4. Why Is the Electronic Health Record So Challenging for Research and Clinical Care?

5. A system to build distributed multivariate models and manage disparate data sharing policies: implementation in the scalable national network for effectiveness research.

6. pSCANNER: patient-centered Scalable National Network for Effectiveness Research.

7. A human rights approach to an international code of conduct for genomic and clinical data sharing.

8. Privacy preserving RBF kernel support vector machine.

9. Accelerating translational research by clinically driven development of an informatics platform--a case study.

10. Parental perspectives on consent for participation in large-scale, non-biological data repositories.