Laura Crane
lauramaycrane.bsky.social
Professor of Autism Studies at the University of Birmingham, UK. Passionate about participatory autism research that truly benefits autistic people. Research interests include education, healthcare, employment and criminal justice.
👤 Joined on 02 October 2023
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- 02 Eki 2023, 16:32
🎉 Bluesky'e katıldı - İlk kullanıcı adı:
@lauramaycrane.bsky.social - 13 Kas 2023, 00:31
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This has been a fantastic project to be involved in. The toolkit is freely available for anyone who wants to find out more about what research is, & how to get involved as a participant, or in helping design research ( #PPIE #Co-production). Useful for autistic & non-autistic people, & researchers.
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Many implications for more ethical, open research collaborating w/ autistic people (+other marginalised participants). Participants generally stated a pref for independent, restricted access repositories vs freely available online - timely to think about with changes at osf www.cos.io/osf-changes
Show PostParticipants also talked about concerns around reidentification from openly available data and questioned whether they were fully informed to consent - in some interviews participants changed their perspectives when given the opportunity to reflect on the implications of data being open
Show PostThere were concerns about possible power imbalances whereby having consented to and participated in one study, control of open data was out of their hands and there was potential for re-narrativisation in a way which could be harmful to autistic people
Show PostOur study of autism community perspectives about Open Data has now been published at @collabrapsychology.bsky.social (🔓) online.ucpress.edu/collabra/art... Participants were generally optimistic about open data to advance autism research and reduced participant burden. But,
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