Light O'Clock (Spotlight)

Research, rooted in reality – The power of lived experience in scientific studies

Host: Carolina Guidolin | Guest: Amy Ferguson, Patricia Pelosi & Nomhle Nhlapho

DOI: 10.17617/qkpb-z786 | License: CC-BY

How do individuals with lived experience and researchers come together to co-design a scientific study? In this special episode of Light O’Clock, we hear from Patrica Pelosi and Nomhle Nhlapho, who have lived experience of bipolar disorder and have contributed to shaping the HELIOS-BD study (more in our previous episode). We also hear from Dr Amy Ferguson, who works closely with the Lived Experience Advisory Panel of the HELIOS-BD study and is the coordinator of the Circadian Mental Health Network.

Links and resources related to the episode’s content

• More on the Circadian Mental Health Network [https://www.circadianmentalhealth.org/]

• Have your say! Survey on what you think researchers should focus on when it comes to sleep, mental health and the body clock: [https://edinburgh.eu.qualtrics.com/jfe/form/SV_7P9EO2VGRjMQmAm] NOTE: This survey is only open to people living in the UK.

• How do you see light? AI-generated art depicting the inner experience of people living with bipolar disorder [https://www.heliosbd.com/gallery]

Timestamps

(00:00) Intro
(00:55) Introducing the guests
(04:36) What is the Circadian Mental Health Network?
(12:45) What does co-design look like for the HELIOS-BD project?
(19:00) Creative aspects of the co-design process
(20:08) How collaboration helps lived experience individuals, scientists, and participants
(23:14) Challenging aspects of co-design
(32:10) Outro