Create, collect and reuse data

Data is collected and generated in a variety of ways in research and the competence in terms of choice of method and technology is found primarily in the individual researcher. Below you will find information on some areas that the research data support at the University often receives questions about.

Sometimes existing data sets can be reused, either as the main data source or as a complement to your own collected data. These data may come from different register holders or be openly available through data repositories. When reusing data, it is important to check the terms of use and licenses. Approved ethical checks may be required for the disclosure of certain data sets.

Data repositories and catalougues

There are a number of repositories and catalogues where data is published. In most cases, the data is directly available for download, but in some cases, an application is required to gain access to the material.

Examples of general, interdisciplinary repositories:

Zenodo, a repository run by OpenAIRE and CERN with funding from the European Commission.
Figshare, a repository run by the company Digital Science.
Dryad, a repository run by a network of univerities, scholarly societies and publishers.

Examples of subject-specific repositories:

CESSDA – social science.
DARIAH – humanities.
ELIXIRs list of deposition databases for biomolecular data - life science.
FEGA Sweden - a repository with controlled disclosure procedures for sharing genomic data.
HEPData – high-energy physics.
NOMAD – material science.
PANGAEA - geosciences and biological sciences.
Swedish Biodiversity Data Infrastructure – biodiversity.
SciLifeLab Data Repository – Life Sciences.

To find additional repositories you can search here:

re3data - 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.

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

Researchdata.se - a national portal for research data from Swedish universities, research infrastructures and research organisations.
OpenAIRE Explore - open 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.
Google's Dataset Search

It is also possible to search for data sets in bibliographic databases such as Uppsala University Library's search service, Web of Science or Dimensions.

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 free transcription of audio and video is available to researchers at UU by applying for a project on UPPMAX and using the Whisper service within that project on the platforms Bianca (NAISS SENS) or Snowy. Even files with sensitive information can be transcribed if Whisper is used on Bianca. Here is a guide for using Whisper at UPPMAX. If you need support, contact UPPMAX.

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.

The Legal, Financial and Administrative Services Agency has procured a 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.

Survey tools

Survey tools offered through Uppsala University.

Kurt – a web-based system that is free to use for everyone at Uppsala University. Can be used to create and manage surveys and registrations. Data is stored on servers at the university. KRT value: 221
Mentimeter – can be used for interactive polls or to collect anonymous comments that are displayed in real-time. Data is stored outside the university, and some data may also be stored outside the EU/EEA. Therefore, avoid questions that encourage responses that may contain sensitive personal data. KRT value: 221
REDCap – a tool for creating and managing surveys and forms with a focus on collecting and analyzing clinical data in research projects. Contact REDCap user support at UCR via itsupport@uu.se for questions about the application and regulations. Data is stored at Uppsala University and the tool can be used for sensitive personal data. KRT value: 321
Survey&Report – a web-based advanced survey tool procured by Sunet (Swedish University computer Network). Response data and personal information are stored externally on the provider Artisans' servers. Therefore, avoid questions that encourage responses that may contain sensitive personal information. KRT value: 221

When using external tools for surveys, a data processing agreement should be signed with the responsible party.