Visualization of Data Use

Full description

Aim

Better understand who has access to which data gathered in a research project. It is not however used to communicate ALL information necessary for informed consent in a research process, but rather helps to visualize the accessibility of the data.

Who to involve

The data process visualization can either be created jointly in the group or by a person responsible for data processing and consent.

Further materials

For the visualization, classic flipchart and paper or digital tools can be used.

Step-by-Step

1. 1. Collect which data will be gathered in the research process. Define the nature of the data according to the following leading questions:
   1. What type of data I collected? E.g. is it an audio recording, a questionnaire, pictures, transcripts, names etc.
   2. Is the data anonymous? Are personal information of research participants or co-researchers part of the data?
2. Define the persons, institutions/organizations, public entities who will have access to the data in any form according to the following leading questions:
   1. Who has access to the primary data? E.g., non-pseudonymised audio files, personal information etc. e.g., professional researchers of a specific institution, or all co-researchers
   2. Who will have access to pseudonymized or anonymized data? E.g., another research partner who will process the data, or a journal or public body who will get a report about the research project
3. Form entities combining the different data forms and who will have access to the data. E.g., anonymous pictures and pseudonymised transcripts will be used for public reports; non-anonymised data will only be accessed by the research group etc.
4. Try to visualize the data processing in a graphic
   E.g., does the data accessibility get smaller the more anonymized it is? Is all data accessible by the public? It helps to think of basic shapes like pyramids, stars or bars for the visualization.
   One example in the gallery shows how the access to certain kinds of data gets smaller the more public it gets.
   Find an illustration of the data process that suits your project best.
5. If not collaboratively designed present the visualization to the research group and discuss if they find it understandable and fitting for the data processing.
6. Use the data visualization to support the informed consent process with research participants.
7. Adapt the visualization if new types of data are gathered in a research process or if the data processing is changed during the project.

Image gallery