Exploring Consent Creatively. Using comic and storytelling
This is an IsITethical?Exchange Project in collaboration with Paris Selinas
This is part of SODA Project a EU2020 investigation on Scalable Oblivious Data Analytics in the Health Sector.
Part of Lancaster University packaged led by IsITethical? Exchange, we explore issues of trust, consent and test potential of the systems connecting data subjects living with dementia (and their caregivers) and data controlled and NHS business intelligence, Public Safety England and data scientists.
You can read all about SODA Project and Ethics through Design in this paper
Experience from past co-design projects with people living with dementia (Luján Escalante et al. 2017, Tsekleves et al., 2018, Luján Escalante 2019), made evident that processes of obtaining participant consent were not satisfactory, as caregivers and researchers had to read and explain point by point the documents, defeating the process of independent consent.
I worked closely with Paris Selinas to design a visual tool that proposes ethical consent as a collaborative and creative process, moving beyond box ticking to explore consent as an opportunity for trust building via creative encounters and meaningful conversations. A tool was designed to collaboratively engage with an informed consent process. Ethical forms were ‘translated’ into visual media (See Figure 1), using comic strip format, and were used as tools to mediate our first encounter with participants and engaging them. The cartoons provided light relief from the written word, they illustrated and opened up debate about serious and sensitive topics.