Our main activities will concern Data Coordination, Data Tracking, Data Access and Data Archiving Support:
The Data Centre will provide different types of communication and coordination services for different groups. For the platforms and their users, we will facilitate the planning for projects run on SciLifeLab platforms from a data management perspective. Although this work is done individually by each platform that serves the user, the Data Centre will assist with ensuring there is a complete plan, including the parts of the project that are outside the interaction between user and platform. For example, users will be advised on how to most efficiently use SciLifeLab resources in a coordinated way, such as when the different platforms will be involved and when the National Bioinformatics Infrastructure, NBIS, will be needed for analysis or systems support. The Data Centre can also advise users on texts for applications for ethics approval or informed consent for study participants.
The Data Centre will link with international consortia and work closely with NBIS that leads the Swedish technical work with these consortia. We will work towards implementing the standards and assist SciLifeLab researchers to follow international guidelines for data management.
The Data Centre will also work with tracking the scientific impact of the generated data, including publications and data made accessible by the projects, to help the research community, clinicians or industry to browse and search the output.
To facilitate that generated data is useful to the receiving project and the research community in the long term, the Data Centre will set up a tracking database, focusing on the data management plan for SciLifeLab supported projects and including information about publications and where and how data made accessible by the projects can be found.
The Data Centre will work closely with the individual platforms to maintain such a database to provide a service and support both to users and platforms. Our goal is to ensure that experimental platforms will be able to work with their established processes and avoid additional work. For the platforms, the tracking database can also assist platforms in evaluations and reporting, and help with estimating the real scientific impact of their output.
The Data Centre will facilitate proper data access for research data generated at SciLifeLab. Today, the data is owned by the university of the principal investigator of the project that receives data. It is their responsibility to ensure secure storage and archival of the data, and mechanisms to manage requests for data access according to established policies. But this is a difficult and cumbersome job, and often hindered by changes in personnel or project organization. For reasons like that, the stewardship of data is not always straightforward, and sometimes delivered data does not reach its potential impact. Because of the laws surrounding access to personal data, it is even more complicated for individual research groups working on human material to manage access requests and publish data in a secure and legal way. Therefore, SciLifeLab Data Centre will provide a service that review requests and authorize successful data applicants, on behalf of the data owners.
The Data Centre will develop, in collaboration with bioethicists, data access policies that pave the way for open/controlled access of all SciLifeLab-generated data as a service to the data owners and the scientific community on a whole.
Data Archiving Support
After a project has been published, the results and the data produced have lasting value and can be used to built new studies on. Roughly 2/3 of new studies make use of existing data, either to entirely support computational research, such as bioinformatic algorithm development, or to support and supplement findings from new datasets. Just as important as accumulating the results and knowledge in publications and knowledge bases is the accumulation of the generated data, raw or processed, in machine-readable databases.
The huge amount of data generated in life sciences today leads to unprecedented challenges in data storage. The Data entre will serve as a knowledge centre for platforms and the Swedish research community, to advise on solutions – whether these are in Sweden or abroad at the international bioinformatic archives. The Data Centre will also participate in the discussions about the legal framework for Swedish researchers to archive scientific data, including sensitive human data.
“Open Access to Research Data – Status, Issues and Outlook” (NordForsk, 2016)
“Proposal for National Guidelines for Open Access to Scientific Information” (Swedish Research Council)
“Förslag till Nationella riktlinjer för öppen tillgång till vetenskaplig information” (Vetenskapsrådet, in Swedish)
“Öppen tillgång (open access) till forskningsdata – en omvärldsbeskrivning 2014” (Vetenskapsrådet, in Swedish)