The second in HEAR’s series of Expert by Experience and academic case studies shares good practice developed by ‘house-bound’ remote researchers:
“Remote Researchers –
learning from experts by experience in digital inclusion”
by the Chronic Illness Inclusion Project
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 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.
Download or share the case study details using the hashtags #RemoteResearchers and #ChallengingDigitalExclusion
Some of the topics considered in the case study and wider CIIP research includes, cognitive difficulties – trouble concentrating, finding words, reading and writing, fluctuating energy and symtoms, and the ethical considerations of online work privacy, confidentiality, difficulties of safeguarding, establishing trust, risk of mental distress, risk from over-exertion and technical solutions to those challenges. See CIIP’s Ethics Review for more detail.