Create, collect and reuse data

Repositories

There are many ways to search for data and a variety of sources to choose from. Here are some examples where you can both publish data and search for data.

Examples of general, interdisciplinary repositories:

SND's research data catalogue, Swedish national data service (consortium of higher education institutions)
DiVA, Uppsala University (consorty of higher learning institutions)
Zenodo, OpenAIRE and CERN with funding from the European Commission
Figshare, Digital Science (company)
Dryad, National Evolutionary Synthesis Center, UNC-CH Metadata Reserach Center, Oxford University, The British Library and California Digital Library
GitHub, Microsoft (company)
Dataverse, Harvard University

Examples of subject-specific repositories:

CESSDA – Social Sciences
DARIAH – Humanities
ELIXIR – Life Sciences life science. Here you will find Elixir’s list of recommended databases, e.g. BioStudies
HEPData – High Energy Physics
NOMAD – Materials Science
PANGAEA – Geoscience and Environmental Science
SBDI – Biodiversity
SICAS Medical Image Repository – Medicine

To find additional repositories you can search here:

re3data (the Registry of Research Data Repositories). Se also the tuturial tutorial on how to search in re3data from Bath University Library.
FAIRsharing databases, University of Oxford.
Core Certified Repositories. A list of repositories that are certified according to the Core Trust Seal requirements. (Research Societies)
The Open Access Directory (OAD) List of subject-specific repositories. (Research Societies)

You can also search for data harvested from numerous providers in data portals, such as:

OpenAIRE Explore Explore Openly available data from studies funded by the European Commission.
Data.europa.eu Open data from European institutions and organizations.
Dataportal.se Data from Swedish organizations and authorities.
DataCite Datasets assigned to DOI, regardless of subject and origin.
Open Science Framework Platform for all types of open scientific objects.

Interview Data

Research data containing personal data shall be handled in accordance with the General Data Protection Regulation and other relevant Swedish legislation. A person's face or voice that has not been distorted can be used to identify the person and is therefore personal data.

For interviews where sensitive information may occur, UU recommends that you conduct your interviews in the form of end-to-end encrypted Zoom sessions. On the Enable End-to-end encryption page, you will find instructions on how to encrypt end- to-end in Zoom. A prerequisite is that the people you interview have a Zoom client installed on their computer or mobile. People outside the university environment can download the client here.

If interviews where sensetive information may occur should not be conducted digitally but should be carried out on site, the university recommends the use of a dictaphone. Transfer the recorded audio files from the dictaphone to a secure storage solution as quickly as possible.

Software for transcribing data with sensitive personal data is available to researchers at UU by applying for projects at UPPMAX and within that project use Whisper on the platforms Bianca, Snowy or Rackham. As long as Whisper is used on UPPMAX, it can be used for sensitive data. Here you will find a guide on how to use Whisper at UPPMAX. UPPMAX support: support@uppmax.uu.se.

It is also possible, as a researcher, to purchase the Sunet Tal-to-Text service directly from Amberscript, provided that you also sign a personal data processing agreement (PUBA) with them. Contact Legal Affairs Division for assessment of the service.

Legal, Financial and Administrative Services Agency has procured framework agreements for manual transcription. If you wish to use the services, please contact Security and Safety Division and Legal Affairs Division for contract-related matters and assessment in each individual case.

You could also temporarily hire a transcriber in the project to solve the problem with personal data handling during the transcription process.

If the data does not contain sensitive personal data, you can use the Canvas Studio transcription service. It is thus possible to use the service for non-sensitive personal data, any data that is classified with a maximum of 222. You can find instructions for Canvas here.

In this guide to good digital audio management (Ariadne Infrastructure) you can read about long-term preservation of audio files and how to maintain data quality over time.

Registry data

On Registerforskning.se (Swedish Research Council) you will find information about different registers, how data is requested and what legislation applies. Research on registry data requires an approved ethical review application and permission from the authority or organization that owns the source data.

The Swedish Research Council's Register Utiliser Tool (RUT) contains detailed information about the registries and variables, but no actual data, microdata. Using RUT you can create a list of variables that are relevant to your research question and which can form a basis for both ethical review and for requesting data.

Via Registerservice, the National Board of Health and Welfare’s service function, you can get help with ordering statistics or individual data. They also provide a list of all registries.

Kvalitetsregister.se (National Quality Registries). Here you can search all the national quality registries (about 100) and find information about the registries.

Some other resources:

Patient data

The research principal is a state authority or a natural or legal person in whose premises the research is carried out, for example a university, a municipality or a region. In a research project where research is carried out both at UU and e.g. caregivers, the different parties are responsible for the part of the project that is carried out by each party. It is therefore important that all parties are stated as the research principals in the application to the Swedish Ethics Review Authority and that it is clearly stated which parts of the research are to be carried out by each party.

Research principals are also data controllers and the division of responsibilities must be made clear. A specific agreement for this may need to be drawn up.

The transfer of data from the healthcare service to Uppsala University for research purposes is usually preceded by requesting the disclosure of data and a formal decision. Uppsala University assumes responsibility for the data received. A Personal Data Processing Agreement (PuBA) which regulates what Uppsala University may or may not do with the data received must be drawn up.

Information on how to order data for research from Region Uppsala can be found on Samverkanswebben. Here you can also find descriptions of the different IT-care systems within Region Uppsala from which you can order data and what conditions apply.

Sequence data with sensitive information can be found in repositories such as the European Genome-Phenome Archive, as well as in general and disciplinary repositories, as mentioned above.