Literature DB >> 20539861

Sharing health data: good intentions are not enough.

Elizabeth Pisani1, Carla AbouZahr.   

Abstract

Epidemiologists and public health researchers are moving very slowly in the data sharing revolution, and agencies that maintain global health databases are reluctant to share data too. Once investments in infrastructure have been made, recycling and combining data provide access to maximum knowledge for minimal additional cost. By refusing to share data, researchers are slowing progress towards reducing illness and death and are denying a public good to taxpayers who support most of the research. Funders of public health research are beginning to call for change and developing data sharing policies. However they are not yet adequately addressing the obstacles that underpin the failure to share data. These include professional structures that reward publication of analysis but not of data, and funding streams and career paths that continue to undervalue critical data management work. Practical issues need to be sorted out too: how and where should data be stored for the long term, who will control access, and who will pay for those services? Existing metadata standards need to be extended to cope with health data. These obstacles have been known for some time; most can be overcome in the field of public health just as they have been overcome in other fields. However no institution has taken the lead in defining a work plan and carving up the tasks and the bill. In this round table paper, we suggest goals for data sharing and a work plan for reaching them, and challenge respondents to move beyond well intentioned but largely aspirational data sharing plans.

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Mesh:

Year:  2010        PMID: 20539861      PMCID: PMC2878150          DOI: 10.2471/BLT.09.074393

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


  11 in total

1.  How to encourage the right behaviour.

Authors: 
Journal:  Nature       Date:  2002-03-07       Impact factor: 49.962

2.  Data's shameful neglect.

Authors: 
Journal:  Nature       Date:  2009-09-10       Impact factor: 49.962

3.  Time for fair trade in research data.

Authors:  Elizabeth Pisani; James Whitworth; Basia Zaba; Carla Abou-Zahr
Journal:  Lancet       Date:  2009-11-13       Impact factor: 79.321

Review 4.  Data sharing in genomics--re-shaping scientific practice.

Authors:  Jane Kaye; Catherine Heeney; Naomi Hawkins; Jantina de Vries; Paula Boddington
Journal:  Nat Rev Genet       Date:  2009-05       Impact factor: 53.242

Review 5.  The effects of excluding patients from the analysis in randomised controlled trials: meta-epidemiological study.

Authors:  Eveline Nüesch; Sven Trelle; Stephan Reichenbach; Anne W S Rutjes; Elizabeth Bürgi; Martin Scherer; Douglas G Altman; Peter Jüni
Journal:  BMJ       Date:  2009-09-07

6.  Megascience. 'Omics data sharing.

Authors:  Dawn Field; Susanna-Assunta Sansone; Amanda Collis; Tim Booth; Peter Dukes; Susan K Gregurick; Karen Kennedy; Patrik Kolar; Eugene Kolker; Mary Maxon; Siân Millard; Alexis-Michel Mugabushaka; Nicola Perrin; Jacques E Remacle; Karin Remington; Philippe Rocca-Serra; Chris F Taylor; Mark Thorley; Bela Tiwari; John Wilbanks
Journal:  Science       Date:  2009-10-09       Impact factor: 47.728

Review 7.  Should data from demographic surveillance systems be made more widely available to researchers?

Authors:  Daniel Chandramohan; Kenji Shibuya; Philip Setel; Sandy Cairncross; Alan D Lopez; Christopher J L Murray; Basia Zaba; Robert W Snow; Fred Binka
Journal:  PLoS Med       Date:  2008-02       Impact factor: 11.069

8.  Informed consent in the genomics era.

Authors:  Deborah Mascalzoni; Andrew Hicks; Peter Pramstaller; Matthias Wjst
Journal:  PLoS Med       Date:  2008-09-16       Impact factor: 11.069

9.  Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.

Authors:  Nils Homer; Szabolcs Szelinger; Margot Redman; David Duggan; Waibhav Tembe; Jill Muehling; John V Pearson; Dietrich A Stephan; Stanley F Nelson; David W Craig
Journal:  PLoS Genet       Date:  2008-08-29       Impact factor: 5.917

10.  Missing data in randomized clinical trials for weight loss: scope of the problem, state of the field, and performance of statistical methods.

Authors:  Mai A Elobeid; Miguel A Padilla; Theresa McVie; Olivia Thomas; David W Brock; Bret Musser; Kaifeng Lu; Christopher S Coffey; Renee A Desmond; Marie-Pierre St-Onge; Kishore M Gadde; Steven B Heymsfield; David B Allison
Journal:  PLoS One       Date:  2009-08-13       Impact factor: 3.240

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  45 in total

1.  Sharing data for public health: where is the vision?

Authors:  Alan D Lopez
Journal:  Bull World Health Organ       Date:  2010-06       Impact factor: 9.408

2.  Publishing research data on a professional basis.

Authors:  Toby Green
Journal:  Bull World Health Organ       Date:  2010-06       Impact factor: 9.408

3.  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

4.  Data sharing: reaching consensus.

Authors:  Jimmy Whitworth
Journal:  Bull World Health Organ       Date:  2010-06       Impact factor: 9.408

5.  The potential of internet-based technologies for sharing data of public health importance.

Authors:  Greg Fegan; Michael Moulsdale; Jim Todd
Journal:  Bull World Health Organ       Date:  2011-02-01       Impact factor: 9.408

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

Authors:  Manju Rani; Brian S Buckley
Journal:  Bull World Health Organ       Date:  2012-10-10       Impact factor: 9.408

Review 7.  DECIPHER: web-based, community resource for clinical interpretation of rare variants in developmental disorders.

Authors:  Ganesh J Swaminathan; Eugene Bragin; Eleni A Chatzimichali; Manuel Corpas; A Paul Bevan; Caroline F Wright; Nigel P Carter; Matthew E Hurles; Helen V Firth
Journal:  Hum Mol Genet       Date:  2012-09-08       Impact factor: 6.150

8.  The national drug abuse treatment clinical trials network data share project: website design, usage, challenges, and future directions.

Authors:  Dikla Shmueli-Blumberg; Lian Hu; Colleen Allen; Michael Frasketi; Li-Tzy Wu; Paul Vanveldhuisen
Journal:  Clin Trials       Date:  2013-10-01       Impact factor: 2.486

9.  Health Data for Public Health: Towards New Ways of Combining Data Sources to Support Research Efforts in Europe.

Authors:  A Burgun; E Bernal-Delgado; W Kuchinke; T van Staa; J Cunningham; E Lettieri; C Mazzali; D Oksen; F Estupiñan; A Barone; G Chène
Journal:  Yearb Med Inform       Date:  2017-09-11

10.  Exploring barriers and solutions in advancing cross-centre population data science.

Authors:  K H Jones; S M Heys; H Daniels; D V Ford
Journal:  Int J Popul Data Sci       Date:  2019-08-05
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