https://www.clarin.eu/event/2022/delad-workshop-2022
Corpora of speech of individuals with communication disorders (CSD) are hard to obtain. They are costly to collect and difficult to share due to privacy issues. Moreover, they are often small in size and very specific in terms of communication impairments addressed. These factors make re-use a challenge on the one hand, and a necessity on the other. In the beginning, two of us (Ball & Müller) organised two workshops in Linköping, Sweden, in 2015 and 2016, in which available resources and issues related to accessibility were inventorised. These workshops resulted in the DELAD initiative (see http://delad.ruhosting.nl/).
From these workshops it was concluded (1) that only a minority of existing CSD can be made accessible due to privacy constraints, and (2) that we now have limited knowhow to collect new CSD that can be shared according to FAIR principles, (3) that the CLARIN infrastructure is indispensable for this purpose. A third workshop was then organised in 2017 in Cork, Ireland with the support of CLARIN. Selected group of experts in communication disorders research and representatives from the CLARIN data centres were brought together to find solutions to issues such as design and implementation of a data repository, data type and formats, metadata categories and formats, IPR/ethics/consent forms, anonymization, as well as best practices and guidelines for data collection. The action plan resulting from the workshop included concrete initiatives related to the topics.
In January 2019 a fourth workshop was organised in Utrecht, the Netherlands. Key topics were legal and ethical aspects of collecting and hosting CSD and the establishment of relevant requirements for the infrastructure for securely sharing CSD. In January 2021 we organised a first online workshop and we will continue this in September this year.
Here are the topics for our next DELAD workshop: Recent developments at ACE / DELAD for support of sharing CDS Sharing clinical data: Obtaining clinical data via hospitals vs Obtaining data outside clinical institutes from alternative organisations The impact of the Data Governance Act & Data Altruism Follow up on voice pseudonimisation And of course there will be plenty of time for researchers’ presentations on their data and options to share these. The workshop will be very interactive and participants are invited to actively participate in the discussions.
