Advantages of a Truly Open-Access Data-Sharing Model — NEJM

“Multi-institutional randomized clinical trials have been a feature of oncology research in the United States since the 1950s. Since that time, cancer-treatment trials have been continuously funded by the National Cancer Institute (NCI) through a program that has evolved to become the National Clinical Trials Network (NCTN). Currently, approximately 19,000 patients with cancer participate in NCTN clinical trials each year. Approximately 70,000 additional patients with cancer are enrolled each year in treatment trials sponsored by the pharmaceutical industry.1,2

It is important to honor and reward the altruism of patients who participate in clinical trials. One way to do so is to share the data gathered in clinical trials with other researchers in a responsible and meaningful way. The cancer research community, encouraged by recommendations from the Beau Biden Cancer Moonshot, is finally moving data sharing forward from its traditional, largely unfunded, place at the end of the long list of clinical research responsibilities to center stage.

There are a number of reasons why it has it taken more than 60 years for this issue to receive the attention that it deserves. Although the incentives for doing so may differ, competitive forces lead both academic researchers and pharmaceutical companies to protect data and to use data exclusively for their purposes. This approach protects their intellectual property and also shields the primary study team and the sponsor if the release of data from a trial for analysis by others leads to conclusions or interpretations that the primary researchers deem to be misleading or erroneous. When the academic and monetary stakes are high, the chance of this situation occurring is real. Another reason for the delay is that the protection of research participants dictates that confidentiality is the highest priority, and this risk may be greater with wide sharing of the new data-dense individual data sets that are required in order to develop personalized medicine approaches. Finally, and probably most important of all, data sharing has been hampered by a lack of resources, including access to enabling data systems technology, bioinformatics expertise, and legal agreements that facilitate sharing.”

Advantages of a Truly Open-Access Data-Sharing Model — NEJM

“Multi-institutional randomized clinical trials have been a feature of oncology research in the United States since the 1950s. Since that time, cancer-treatment trials have been continuously funded by the National Cancer Institute (NCI) through a program that has evolved to become the National Clinical Trials Network (NCTN). Currently, approximately 19,000 patients with cancer participate in NCTN clinical trials each year. Approximately 70,000 additional patients with cancer are enrolled each year in treatment trials sponsored by the pharmaceutical industry.1,2

It is important to honor and reward the altruism of patients who participate in clinical trials. One way to do so is to share the data gathered in clinical trials with other researchers in a responsible and meaningful way. The cancer research community, encouraged by recommendations from the Beau Biden Cancer Moonshot, is finally moving data sharing forward from its traditional, largely unfunded, place at the end of the long list of clinical research responsibilities to center stage.

There are a number of reasons why it has it taken more than 60 years for this issue to receive the attention that it deserves. Although the incentives for doing so may differ, competitive forces lead both academic researchers and pharmaceutical companies to protect data and to use data exclusively for their purposes. This approach protects their intellectual property and also shields the primary study team and the sponsor if the release of data from a trial for analysis by others leads to conclusions or interpretations that the primary researchers deem to be misleading or erroneous. When the academic and monetary stakes are high, the chance of this situation occurring is real. Another reason for the delay is that the protection of research participants dictates that confidentiality is the highest priority, and this risk may be greater with wide sharing of the new data-dense individual data sets that are required in order to develop personalized medicine approaches. Finally, and probably most important of all, data sharing has been hampered by a lack of resources, including access to enabling data systems technology, bioinformatics expertise, and legal agreements that facilitate sharing.”

Open Access and Open Data gaining momentum in Nepal – Open Knowledge International Blog

“This blog is part of the event report series on International Open Data Day 2017. On Saturday 4 March, groups from around the world organised over 300 events to celebrate, promote and spread the use of open data. 44 events received additional support through the Open Knowledge International mini-grants scheme, funded bySPARC, the Open Contracting Program of Hivos, Article 19, Hewlett Foundation and the UK Foreign & Commonwealth Office. This event was supported through the mini-grants scheme under the Open Research theme.

For the 5th time in a row, the Open Knowledge Nepal team led the efforts of organising International Open Data Day in Nepal. This year it was a collaborative effort of Kathmandu Living Labs and Open Knowledge Nepal. It was also the first official event out of Kathmandu Valley of Open Knowledge Nepal. Organisations like Code for Nepal, Gandaki College of Engineering and Science and Open Access Nepal were the partners for the event.”

Do US Patent Incentives Need To Change To Get The ‘Cancer Moonshot’ Off The Ground? – Intellectual Property Watch

“The Moonshot is a partnership with the public, and significant public funds are being invested in the project. It is not so simple, however, to argue that information generated under the Moonshot can be ordered to be shared. When private companies work together on this project, they won’t just be sharing their data but sharing how they collect that data. Much of this information falls under the category of trade secrets, which companies guard closely….[Jacob] Sherkow advocates for prohibiting information that could be shared from eligibility as trade secrets….This would be coupled with a broadening of patentability criteria, said Sherkow. “Broadening up patentable subject matter has its disadvantages, to be sure, but in something like a public-private partnership, where the name of the game is creating information and then disclosing it to people, that’s definitely better than having the taxpayer pay for private trade secrets that vest in a for-profit company,” he said….”

The science ‘reproducibility crisis’ – and what can be done about it

“The solution to the scientific reproducibility crisis is to move towards Open Research – the idea that scientific knowledge of all kinds should be openly shared as early as it is practical in the discovery process. We need to reward the publication of research outputs along the entire process, rather than just each journal article as it is published.”

The Landscape of Research Data Repositories in 2015: A re3data Analysis

“This article provides a comprehensive descriptive and statistical analysis of metadata information on 1,381 research data repositories worldwide and across all research disciplines. The analyzed metadata is derived from the re3data database, enabling search and browse functionalities for the global registry of research data repositories. The analysis focuses mainly on institutions that operate research data repositories, types and subjects of research data repositories (RDR), access conditions as well as services provided by the research data repositories. RDR differ in terms of the service levels they offer, languages they support or standards they comply with. These statements are commonly acknowledged by saying the RDR landscape is heterogeneous. As expected, we found a heterogeneous RDR landscape that is mostly influenced by the repositories’ disciplinary background for which they offer services.”

Open Access and Open Data gaining momentum in Nepal – Open Knowledge Nepal

“For the 5th time in a row, Open Knowledge Nepal team led the effort of organizing International Open Data Day in Nepal. This year it was a collaborative effort of Kathmandu Living Labs and Open Knowledge Nepal. It was also the first official out of Kathmandu Valley event of Open Knowledge Nepal. Organizations like Code for NepalGandaki College of Engineering and Science and Open Access Nepal were the partners for the event. In Nepal, the event aims to served as a platform for bringing together open knowledge enthusiasts from different backgrounds, and support a series of collaborative events for enhancing knowledge and awareness about free and open source software, open data, open content, and various open knowledge technologies. There were 4 different major activities of the event: Presentation Session, Open Street Mapathon, Open Research Data Hackathon and Treasure Hunt.”

Pilot programme Open Research Data (ORD): Twelve projects could be funded

“Open access to qualified research data is a precondition for the reproducibility, verification and falsification of data for further scientific and practical purposes. Hence, the FWF, supported by the Nationalstiftung für Forschung, Technologie und Entwicklung, has initiated the pilot programme Open Research Data (ORD) in order to create role models for the openness of research data in the digital age. 

Open research data is defined as data produced in a course of research projects by experiments, source research, measurements, excavations, surveys or software developments and which are, following the FAIR Data Principles, findable, openly accessible, interoperable and re-usable. In January 2016, the FWF invited to an expression of interest for the pilot programme Open Research Data (ORD). 48 letters of interest were submitted. Based on the decision of the FWF Board in May 2016, 47 of those were invited for a full proposal. Until July 2016, the FWF received 41 full proposals, 19 in Humanities & Social Sciences, eleven in each the Natural Sciences and Life Sciences. After an international peer-review according to the high-quality FWF procedures, twelve projects could be funded:

List of projects  Especially the high share of projects from the Humanities is remarkable. On the basis of this experience, the FWF will implement guidelines in all programmes which help to increase the openness of research data. Furthermore, with the programme Synthesis Networks a new initiative is planned that will enable international projects to conflate, process and analyse large datasets in order to answer highly relevant questions to science and society.”