The need for science to focus on data sharing

From: http://sciencemeetsbusiness.com.au/nas-releases-open-science-report-claims-data-just-valuable-publication/?

The need for science to focus on data sharing

July 27, 2018

Should scientists’ incentives place as much emphasis on how openly available they make their data, as on the scholarly articles they publish?

The USA’s National Academies of Sciences (NAS) has released a new study that sheds light on the state of open science around the world. The report, Open Science by Design: Realizing a Vision for 21st Century Research, says different scientific disciplines are facing different issues, but all of them need to focus on data as much as publications.  More....

A funder-imposed data publication requirement seldom inspired data sharing - Plos article

Available: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0199789

Abstract

Growth of the open science movement has drawn significant attention to data sharing and availability across the scientific community. In this study, we tested the ability to recover data collected under a particular funder-imposed requirement of public availability. We assessed overall data recovery success, tested whether characteristics of the data or data creator were indicators of recovery success, and identified hurdles to data recovery. Overall the majority of data were not recovered (26% recovery of 315 data projects), a similar result to journal-driven efforts to recover data. Field of research was the most important indicator of recovery success, but neither home agency sector nor age of data were determinants of recovery. While we did not find a relationship between recovery of data and age of data, age did predict whether we could find contact information for the grantee. The main hurdles to data recovery included those associated with communication with the researcher; loss of contact with the data creator accounted for half (50%) of unrecoverable datasets, and unavailability of contact information accounted for 35% of unrecoverable datasets. Overall, our results suggest that funding agencies and journals face similar challenges to enforcement of data requirements. We advocate that funding agencies could improve the availability of the data they fund by dedicating more resources to enforcing compliance with data requirements, providing data-sharing tools and technical support to awardees, and administering stricter consequences for those who ignore data sharing preconditions.

Available: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0199789

Cambridge Analytica controversy must spur researchers to update data ethics

A scandal over an academic’s use of Facebook data highlights the need for research scrutiny.

Nature 555, 559-560 (2018)

doi: 10.1038/d41586-018-03856-4 

Data Sharing from Clinical Trials — A Research Funder’s Perspective. New England Journal of Medicine

http://www.nejm.org/doi/full/10.1056/NEJMsb1708278

Robert Kiley, Tony Peatfield, Jennifer Hansen, and Fiona Reddington

N Engl J Med 2017; 377:1990-1992November 16, 2017DOI: 10.1056/NEJMsb1708278

"The Wellcome Trust, the Medical Research Council, Cancer Research UK, and the Bill and Melinda Gates Foundation share a common vision for maximizing the value of data that are generated through the trials we fund. We are committed to ensuring that the data from published clinical trials can be accessed by researchers so they can validate key findings, stimulate further inquiry, and ultimately deliver lifesaving results."

"As funders of medical research, we recognize the importance of the appropriate sharing of clinical-trial data for reasons of transparency, good practice, and accelerated dissemination of results to the broader community. There is now a clear consensus that the results of all clinical trials must be reported in a timely manner, as set out in a joint statement by the World Health Organization regarding public disclosure of results from clinical trials.4 In addition, all our organizations have implemented data-sharing policies requiring that the data from studies we have funded will be made available to other researchers at the time of publication. This requirement applies equally to clinical trials.

These policies, however, do not mean that such data have to be openly available for anyone to access on the Web. We fully recognize that some data — and especially clinical-trial data — may contain sensitive, personal information about research participants, and these data need to be shared in a manner that protects participants’ privacy and confidentiality and respects the terms under which they consented to take part in the study. Such an approach might include the use of managed-access procedures, whereby requests to access data are reviewed by an independent committee, and of data-access agreements that place appropriate restrictions on how the data may be used."

Australian Computer Society released their Data Sharing Frameworks Technical White Paper.

https://ia.acs.org.au/article/2017/acs-dives-into-data-frameworks.html

https://www.acs.org.au/content/dam/acs/acs-publications/ACS_Data-Sharing-Frameworks_FINAL_FA_SINGLE_LR.pdf

De-identification Decision-Making Framework released by OAIC and CSIRO Data61.

https://www.oaic.gov.au/agencies-and-organisations/guides/de-identification-decision-making-framework 

Making Progress Toward Open Data

Reflections on Data Sharing at PLOS ONE

 

Blog post by Meg Byrne

http://blogs.plos.org/everyone/2017/05/08/making-progress-toward-open-data/ 

Nature now requires data availability statements

NATURE | EDITORIAL

Sharing

Announcement: Where are the data?

07 September 2016

Starting this month, all research papers accepted for publication in Nature and an initial 12 other Nature titles will be required to include information on whether and how others can access the underlying data.

Nature article: Data sharing: Access all areas

Data sharing: Access all areas

• Brian Owens

Nature

 

533,

 

S71–S72

 

(12 May 2016)

 

doi:10.1038/533S71a

Published online

11 May 2016

http://rdcu.be/id8u

Advocates say that open science will be good for innovation. One neuroscience institute plans to put that to the test.

"Over the next five years, McGill University's Montreal Neurological Institute and Hospital (the Neuro) in Canada will conduct a radical experiment in open science. It will make all results, data and publications from its research free to access, will require collaborators to do the same, and, perhaps most surprisingly, will not pursue patents on any of its discoveries...."

Tool for tracking data sharing policies (US)

The Scholarly Publishing and Academic Resources Coalition (SPARC), in collaboration with Johns Hopkins University Libraries, has released a new resource for tracking, comparing, and understanding U.S. federal funder research data sharing policies. This free tool, launched at datasharing.sparcopen.org, provides a detailed analysis of 16 federal agency responses to the directive issued by the White House Office of Science and Technology Policy (OSTP) on Increasing Access to the Results of Federally Funded Research. Specifically, the new resource focuses on how these agencies intend to make the digital data associated with the projects they fund available for access and reuse. Browse or download the full dataset.

Scientific Data to publish a wider range of research advancing data sharing and reuse

Scientific Data is expanding the kinds of content it publishes, providing a richer forum for advances in open, reproducible science.

See:

http://blogs.nature.com/scientificdata/2016/04/07/scientific-data-to-publish-a-wider-range-of-research-advancing-data-sharing-and-reuse

Global scientific community commits to sharing data on Zika

http://www.wellcome.ac.uk/News/Media-office/Press-releases/2016/WTP060169.htm

Also see Nature's article on the benefits of sharing.
http://www.nature.com/news/benefits-of-sharing-1.19322

Journal Editors to Researchers: show everyone your clinical data

"...last Wednesday, the editors of the leading medical journals around the world made a proposal that could change medical science forever. They said that researchers would have to publicly share the data gathered in their clinical studies as a condition of publishing the results in the journals. This idea is now out for public comment".

See:
http://www.npr.org/sections/health-shots/2016/01/26/464010931/journal-editors-to-researchers-show-everyone-your-clinical-data  

U.K.'s Economic and Social Research Council Research Data Policy Updated

The U.K.'s Economic and Social Research Council research data policy has been updated earlier in March this year.  This is clearly relevant to Australian researchers collaborating with researchers funded through the ESRC program.

"All data created or repurposed during the lifetime of an ESRC grant must be made available for re-use or archiving within three months of the end of the grant. Grant holders must provide metadata for resource discovery via the UK Data Service to maximise the discoverability of ESRC data assets."

http://www.esrc.ac.uk/about-esrc/information/data-policy.aspx

 

The BMJ becomes first general medical journal to require data sharing for all submitted trials

The BMJ, a weekly peer-reviewed medical journal, requires sharing of individual patient data for all clinical trials, effective July 1, 2015. This means that trials will be considered for publication only if the authors agree to make the relevant anonymised patient level data available on reasonable request.

According to Elizabeth Loder, The BMJ's acting head of research, The BMJ is the first general medical journal to require data sharing for all trials, extending its initial policy on sharing data for trials of drugs or devices, which took effect in January 2013.

In an editorial to mark the launch of the new policy, she explains that the initial policy focused on trials of drug and devices 'because many high profile, serious allegations of selective or non-reporting of trial results related to such products.' However, she says, growing experience and evidence show that reporting problems are not limited to the corporate sector, but affect academic and government sponsored trials as well.

Today's announcement follows initiatives by the US Institute of Medicine (IOM), the World Health Organization (WHO), and the Nordic Trial Alliance, to encourage data transparency.

For instance, a recent IOM report called for a transformation of existing scientific culture to one where 'data sharing is the expected norm' while WHO has said the main results of clinical trials should be made publicly available and submitted for journal publication within a year of study completion.

The efforts of industry, too, must be acknowledged, says Loder. In particular, Medtronic's cooperation with the Yale University Open Data project and GlaxoSmithKline's leadership on data disclosure efforts stand out.

Making anonymised patient level data from clinical trials available for independent scrutiny allows other researchers to replicate key analyses, reduces the possibility that studies will be unnecessarily duplicated, and maximises use of the information from trials - an important moral obligation to trial participants, she writes.

She acknowledges that an initial investment of time and money is needed to prepare trial data for sharing, 'but after the first use there are few additional costs; in essence, the value of the data increases with each use,' she concludes.
More at: http://www.bmj.com/content/350/bmj.h2373