Further information
References:
- NIHR Research Participant Experience Survey Report 2018-19:
https://www.nihr.ac.uk/ documents/research-participant-experience-survey-report-2018-19/12109 - NIHR Participant in Research Experience Survey (PRES):
https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-learn-about-research/participant-in-research-experience-survey.htm - Cox K, Wilson E, Arthur A, Elkan R, & Armstrong S (2005). A randomised controlled trial of nurse-managed trial conclusion following early phase cancer trial participation. British Journal of Cancer, 93(1), 41–45.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361479/ - Information for participants at the end of a study: Guidance for Researchers/Sponsors/ Chief Investigators/Principal Investigators:
https://s3.eu-west-2.amazonaws.com/www.hra.nhs.uk/media/documents/hra-guidance-end-study-pis-v4-1_20-august-2015.pdf - What is PALS (Patient Advice and Liaison Service)?
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/ - Cancer Research UK – what is patient involvement?
https://www.cancerresearchuk.org/get-involved/volunteer/patient-involvement/what-is-patient-involvement - NIHR – I want to help with research:
https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/ - Capacity and consent to research: https://www.capacityconsentresearch.com/
- Parkinson’s UK: Staying connected with your participants:
https://www.parkinsons.org.uk/research/staying-connected-your-participants
Further information about ensuring information is suitably accessible:
- See our guidance on accessible patient communnications ‘Adjusting for Access‘, produced with the MRC Clinical Trials Unit at UCL
- Coleman, E., O’Sullivan, L., Crowley, R. et al. Preparing accessible and understandable clinical research participant information leaflets and consent forms: a set of guidelines from an expert consensus conference. Res Involv Engagem 7, 31 (2021).
https://doi.org/10.1186/s40900-021-00265-2 - NHS England Accessible Information Standard – Implementation Guidance:
https://www.england.nhs.uk/publication/accessible-information-standard-implementation-guidance/ - British Dyslexia Association – Dyslexia-friendly style guide:
https://www.bdadyslexia.org.uk/advice/employers/creating-a-dyslexia-friendly-workplace/dyslexia-friendly-style-guide - Gov.uk – Accessible Information Formats:
https://www.gov.uk/government/publications/inclusive-communication/accessible-communication-formats - Autistica – Participant information, consent and assent forms:
https://www.autistica.org.uk/our-research/research-toolkit/info-sheet