In December and January 23/24 a series of public consultation / toolkit testing events took place at the Arc Center Stockport and with clinicians at the Manchester & Salford Pain Centre. The sessions were led by Dr Jasmine Hearn and the toolkit interrogated as a design system through which to locate a patient informed language of endometrial pain.
Workshop 1-3 participant groups were invited back to take part in the sessions and to understand how their engagement with the project had informed the toolkit design development and process.
In these sessions, we presented the toolkit back to participants, described our intended use for the toolkit, and provided time for participants to review the toolkit independently and with the larger group, reading the content and trying out the experiential activities.
We gathered feedback on the toolkit centred on the following themes:
Usefulness – this focused on how useful participants found the toolkit in communicating their experience of endometriosis pain, and in understanding the experiences of other people. We prompted participants to consider why it was useful, how they might use it in future, how helpful it is in improving confidence discussing endometriosis pain to others.
Diagnosis and management – this focused on how the toolkit might be used to facilitate diagnosis and management.
Design – this centred on the design of the toolkit, with prompts to garner feedback on the images, language, colour scheme, format, shape, font.
Adaptability – we asked participants to consider how they might adapt the toolkit for their own use and for that of others.
Version 2 of the toolkit reproduced below, reflects the amendments made in response to user testing Dec 2023 to Jan 2024
