On the 17th of March, the NIHR Schools for Primary Care, Public Health and Social Care Research organised the second webinar in their series "Diversity and involvement: whom to involve?”. After a first session on engaging and working with young people back in December, the second session was about involving people living with dementia and learning difficulties in research.
Dr Jemima Dooley, Senior Research Associate at the University of Bristol, and Prof Rachel Fyson, Professor of Social Work at the University of Nottingham, gave insightful presentations about their experiences of patient and public involvement and answered queries from the audience. More about the event can be read here.
A recording is now available for those who couldn't attend or want to hear from Jemima and Rachel again:
Resources from presentations
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John’s video: https://www.youtube.com/watch?v=vfVTtJff9_Q
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Alzheimer’s Society: https://www.alzheimers.org.uk/dementia-professionals/dementia-experience-toolkit/research-methods
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NHS Digital: Health & care of people with learning disabilities
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NHS: Learning from Lives and Deaths: People with a Learning Disability and autistic people (LeDeR)
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Free online readability test
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NHS Health Research Authority: Mental capacity
- Mencap: Involve Me
Resources shared in the chat of the event
- The dementia researcher network is specifically aimed at supporting early career researchers in dementia: https://www.dementiaresearcher.nihr.ac.uk
- The University of East Anglia have a current project, called Assent, with resources regarding including people in research with impairments of capacity and/or communication: https://www.uea.ac.uk/groups-and-centres/assent
- An NIHR SSCR webinar with a section on ethics and the Mental Capacity Act: https://www.sscr.nihr.ac.uk/event/researchethics/
- A photo library that has pictures for easy read information as a suggestion to use in information sheets and reports: https://www.photosymbols.com/