Resource was added by: Annee Amjad
What is this resource?
This toolkit is a simple communication framework to help researchers share updates with research participants. Many participants have shared that they would be more likely to keep taking part in research if they received more updates.
Who was it developed by?
Parkinson's UK
When might it be useful?
Whilst this toolkit is focused on participation in research, elements of the toolkit can also be used to keep PPI members updated. Parkinson's UK also encourage researchers to work with PPI members when designing the communications within the toolkit.
Feedback for PPI members – Parkinson’s UK guidance
Resource was added by: Annee Amjad
What is this resource?
PPI members that get involved in research often want to hear the impact they've had on research. This guidance document offers researchers help and examples to provide feedback to PPI members. Parkinson’s UK make it a condition of their support that researchers provide contributors with feedback on the outcomes of their involvement.
Who was it developed by?
Parkinson's UK
When might it be useful?
You may wish to develop your own guidance document to encourage researchers to provide feedback.
Stopping involvement
Resource was added by: Bec Hanley
In June 2022 the Shared Learning Group on Involvement talked about how to support people with lived experience to stop their involvement. Thanks to Abby Meadows from Turn2us, Nicola Lucey and Angela Slater from Mind and Derek Stewart, a patient advocate, for sharing their experience and prompting really useful discussions amongst members. This paper summarises our discussions.
We've made this paper available publicly, so you can share it widely if you wish.
Breast Cancer Now involvement impact report
Resource was added by: Bec Hanley
Report from Breast Cancer Now about the impact of their Insight and Experience Panel.
Cystic Fibrosis Trust feedback form
Resource was added by: Bec Hanley
Used to ask the views of people affected by CF about focus groups to discuss research. Thanks to Lorna Allen for sharing this.
Young Women’s Trust journey questionnaire – part 1
Resource was added by: Bec Hanley
First of three journey questionnaires that Young Women's Trust advisory panel members fill in at the beginning, middle and end of their 2-years on the panel. It's a great tool to measure how effective their involvement has been for them in terms of skills, well-being, how far they feel they have been listened to by different audiences and their future aspirations.