Parkinson’s UK have released a clear and simple communication framework to help researchers share updates with participants. Whilst inspired through their research in Parkinson’s Disease, the toolkit and resources are applicable to anyone undertaking research which involves people.
Results from a survey of people who had taken part in research, show that 80% of respondents would be more likely to take part in future studies if they received updates from the researchers. It’s this that inspired Parkinson’s UK to develop this toolkit, to make it easy for the research community to communicate with their study participants. Importantly this was co-produced with researchers and the Parkinson’s community, the toolkit is designed to keep people who’ve taken part updated and engaged until the research findings are published.
You can view the toolkit master guide or download individual elements via the link below
Parkinson’s UK ToolsThis toolkit has been developed with the HRA (Health Research Authority) and RECs (Research Ethics Committees) and reflects accepted good practice for communicating with participants.
If you have any questions, comments or feedback about the toolkit, please get in touch with us at participation@parkinsons.org.uk.
Dr Kamar Ameen-Ali
Dr Yvonne Couch
NIHR
Dr Clarissa Giebel