As a result of the DELAD workshop in January 2021, the DELAD steering group recorded a video which addresses the basic elements of a Data Protection Impact Assessment (DPIA) for sharing sensitive patient research data. The video was recorded as a role play following the structure and guidelines set up by Esther Hoorn at the University of Groningen as outlined here.
The goal of the role play is to show students and researchers working with patient data which elements and stakeholders are important to consider in a DPIA, and stimulate them to work along simialr lines for a DPIA for their own data if they intend to share the data with others.
The setting of the role play is the following:
Alice, researcher, has developed an algorithm for voice conversion. This technique can alter the speech signal in a way so that the speakers could not be recognised by the third party. This kind of pseudonymised speech data is potentially useful for research in many other disciplines or research design. The algorithm was developed based on speech samples collected from typical adult speakers of English, German, and Dutch. The next step is to test this algorithm on other languages, age groups and speakers with different types of speech disorders. There is a dataset that comprises speech samples of 60+ Polish-speaking children with speech difficulties associated with hearing impairment. The dataset is available under restricted access conditions. The repository sees it as its responsibility to contact the representatives of data providers for permission.
The video shows a meeting of stakeholders of the Polish dataset, based on a method for a Data Protection Impact Assessment. They discuss if and under which conditions the dataset can be made available for the research purpose in the light of the GDPR.
You can find the material here:
- Trailer of the role play
- Video of the role play
- Role cards for the play
- DPIA report created as a result of the role play (with role play introduction)
The material was presented at the CLARIN Annual Conference 2021. There is also a CLARIN Impact Story about the role play: Navigating the GDPR with Innovative Educational Materials
Actors in the role play:
- Alice Lee as Alice (postdoc)
- Esther Hoorn as Erin (Legal expert)
- Nicola Bessell as Aine (Ethics Committee member)
- Satu Salaasti as Anita (Researcher)
- Katarzyna Klessa as Kate (Data subject representative)
- Henk van den Heuvel as Archie (Data archiver)
- Paul Trilsbeek as Alan (ICT specialist of the archive)
Refer to this role play as: Hoorn, E., Van den Heuvel, H., Bessell, N., Klessa, K., Lee, A., Salaasti, S., Trilsbeek, P. (2021): Privacy by Design in Research: A DPIA role play with video. Teaching material published at the CLARIN Annual Conference 2021.
You are kindly invited to use the role play in your classes about how to protect sensitive data. Feel free to contact Esther Hoorn for advice or feedback.
This DPIA roleplay can be perceived as an example for the work needed for future dialogues between the legal and technology communities as regards speech data with the aim that advances in technology are accompanied with adequate provisions for privacy preservation.
For further reading: Nautsch et al. (2019) The GDPR & Speech Data: Reflections of Legal and Technology Communities, First Steps towards a Common Understanding (arxiv.org). In: Proceedings of the Annual Conference of the International Speech Communication Association, INTERSPEECH; 2019.