The Chronic Illness Inclusion Project research practice was developed by and with a community of disabled people living with energy limiting chronic illness (ELCI). It was adapted to meet the needs and circumstances of participants and Expert by Experience researchers.The practice developed was an extended online focus group.
The purpose of this case study is to highlight their broader research; give the community a voice; and share and promote the good practice, knowledge and experience CIIP developed in engaging ‘house-bound’ people in ‘Internet Mediated Research’.
Their work has never been more applicable than in a post-pandemic, cocooning communities world.
Case Study Text: "Title: "Remote researchers - learning form experts - by Experience in digital inclusion case study by the Chronic Illness Inclusion Project. Body Text - "All three researchers belonged to , and were active in, chronic illness communities online before the research. ...our sared lived experience with participants was an important factor in gainig their trust. Our own experientail knoweldge shared the questions we asked and the way we responded to participants answers. The design of our research practice was new and experimental....we were surprised at .....how much trust and solidaity developed between participants, and how honest and revealing the information they shared was. The focus group generated over 38,000 words of discussion...after eight weeks of intensive discussion.
#RemoteResearchers, #WeAreTheDigitalRevolution, #ChallengeDigitalExclusion, #7DeadlySins. "
- Case Study - Remote Researchers - learning from experts-by-experience in digital inclusion
- Case Study - link to transcript
- Website: Chronic Illness Inclusion Project