Literature DB >> 23284199

Systematic archiving and access to health research data: rationale, current status and way forward.

Manju Rani1, Brian S Buckley.   

Abstract

Systematically archiving data from health research and large-scale surveys and ensuring access to databases offer economic benefits and can improve the accountability, efficiency and quality of scientific research. Recently, interest in data archiving and sharing has grown and, in developed countries, research funders and institutions are increasingly adopting data-sharing policies. In developing countries, however, there is a lack of awareness of the benefits of data archiving and little discussion of policy. Many databases, even those of large-scale surveys, are not preserved systematically and access for secondary use is limited, which reduces the return on research investment. Several obstacles exist: organizational responsibility is unclear; infrastructure and personnel with appropriate data management and analysis skills are scarce; and researchers may be reluctant to share.This article considers recent progress in data sharing and the strategies and models used to encourage and facilitate it, with a focus on the World Health Organization Western Pacific Region. A case study from the Philippines demonstrates the benefits of data sharing by comparing the number and type of publications associated with two large-scale surveys with different approaches to sharing.Advocacy and leadership are needed at both national and regional levels to increase awareness. A step-by-step approach may be the most effective: initially large national databases could be made available to develop the methods and skills needed and to foster a data-sharing culture. Duplication of costs and effort could be avoided by collaboration between countries. In developing countries, interventions are required to build capacity in data management and analysis.

Mesh:

Year:  2012        PMID: 23284199      PMCID: PMC3524959          DOI: 10.2471/BLT.12.105908

Source DB:  PubMed          Journal:  Bull World Health Organ        ISSN: 0042-9686            Impact factor:   9.408


  14 in total

1.  Data sharing in medical research: an empirical investigation.

Authors:  D D Reidpath; P A Allotey
Journal:  Bioethics       Date:  2001-04       Impact factor: 1.898

2.  Sharing health data: developing country perspectives.

Authors:  Viroj Tangcharoensathien; Jirawan Boonperm; Pongpisut Jongudomsuk
Journal:  Bull World Health Organ       Date:  2010-06       Impact factor: 9.408

3.  Sharing research data to improve public health.

Authors:  Mark Walport; Paul Brest
Journal:  Lancet       Date:  2011-01-07       Impact factor: 79.321

4.  Learning from the TGN1412 trial.

Authors:  Michael Goodyear
Journal:  BMJ       Date:  2006-03-22

5.  Much room for improvement in deposition rates of expression microarray datasets.

Authors:  Scott A Ochsner; David L Steffen; Christian J Stoeckert; Neil J McKenna
Journal:  Nat Methods       Date:  2008-12       Impact factor: 28.547

6.  Identifying data sharing in biomedical literature.

Authors:  Heather A Piwowar; Wendy W Chapman; Wendy Chapman
Journal:  AMIA Annu Symp Proc       Date:  2008-11-06

Review 7.  A systematic review of Demographic and Health Surveys: data availability and utilization for research.

Authors:  Madeleine Short Fabic; YoonJoung Choi; Sandra Bird
Journal:  Bull World Health Organ       Date:  2012-06-11       Impact factor: 9.408

8.  Who shares? Who doesn't? Factors associated with openly archiving raw research data.

Authors:  Heather A Piwowar
Journal:  PLoS One       Date:  2011-07-13       Impact factor: 3.240

9.  Data sharing: how much doesn't get submitted to GenBank?

Authors:  Mohamed A F Noor; Katherine J Zimmerman; Katherine C Teeter
Journal:  PLoS Biol       Date:  2006-07-11       Impact factor: 8.029

10.  Empirical study of data sharing by authors publishing in PLoS journals.

Authors:  Caroline J Savage; Andrew J Vickers
Journal:  PLoS One       Date:  2009-09-18       Impact factor: 3.240

View more
  19 in total

1.  Effect of TB/HIV Integration on TB and HIV Indicators in Rural Ugandan Health Facilities.

Authors:  Sarah M Burnett; Stella Zawedde-Muyanja; Sabine M Hermans; Marcia R Weaver; Robert Colebunders; Yukari C Manabe
Journal:  J Acquir Immune Defic Syndr       Date:  2018-12-15       Impact factor: 3.731

2.  Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.

Authors:  Michael Parker; Susan Bull
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

3.  Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.

Authors:  Spencer G Denny; Blessing Silaigwana; Douglas Wassenaar; Susan Bull; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

4.  Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.

Authors:  Ketaki Hate; Sanna Meherally; Neena Shah More; Anuja Jayaraman; Susan Bull; Michael Parker; David Osrin
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

5.  Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand.

Authors:  Phaik Yeong Cheah; Decha Tangseefa; Aimatcha Somsaman; Tri Chunsuttiwat; François Nosten; Nicholas P J Day; Susan Bull; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

Review 6.  Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Authors:  Susan Bull; Nia Roberts; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

7.  Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya: Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement.

Authors:  Irene Jao; Francis Kombe; Salim Mwalukore; Susan Bull; Michael Parker; Dorcas Kamuya; Sassy Molyneux; Vicki Marsh
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

8.  Providing open access data online to advance malaria research and control.

Authors:  Catherine L Moyes; William H Temperley; Andrew J Henry; Clara R Burgert; Simon I Hay
Journal:  Malar J       Date:  2013-05-16       Impact factor: 2.979

9.  Research Stakeholders' Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations.

Authors:  Irene Jao; Francis Kombe; Salim Mwalukore; Susan Bull; Michael Parker; Dorcas Kamuya; Sassy Molyneux; Vicki Marsh
Journal:  PLoS One       Date:  2015-09-02       Impact factor: 3.240

Review 10.  Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.

Authors:  Susan Bull; Phaik Yeong Cheah; Spencer Denny; Irene Jao; Vicki Marsh; Laura Merson; Neena Shah More; Le Nguyen Thanh Nhan; David Osrin; Decha Tangseefa; Douglas Wassenaar; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.