On the value of Co-Creative Poetic Inquiry for understanding lived experiences of HIV, personal data interactions and self-care

We would like to thank Design Informatics at Edinburgh University for inviting us to join their webinar series on 29th April 2020. In our talk we described our collaborative and co-creative research practice within the INTUIT programme, focusing on a study we recently conducted at Blue Sky Trust (Newcastle) and Terrence Higgins Trust (London), both of which are HIV organisations.

The study explored people’s lived experiences of HIV, and their interests, beliefs and concerns about sharing and tracking personal data as part of self-care and managing HIV in daily life. We highlighted the value of dialogue between research participants and project team members, which combined creative design practice and poetic inquiry for meaningful engagement. We highlighted how the medium of visual poetry enabled us (researchers) to retain the emotional tone of participants’ expressions when disseminating research findings – by presenting (and performing) visual poems to audiences and sharing insights. Finally, we discussed the factors enabling peer research within a research process of co-production.

Watch the recording of our talk and other Design Informatics webinars here.

Design Informatics is a research centre that designs systems for better human data interaction, in diverse settings such as health, culture, mobility and finance. Researchers at the centre explore how the design of flows of data sustain and enhance human values, through the use of new and emerging technologies and services such as the Internet of Things (IoT), Blockchain, Robotics, Speech Recognition and Data Visualisation.

We would like to thank Blue Sky Trust and Terrence Higgins Trust and the participants across all of our focus groups for participating in the INTUIT study.