Resource was added by: Bec Hanley
We know that involvement in research adds value to research. This report looks at how it adds value for the charities that fund and support research.
Note that this version of the report is for members only. There’s a public version of this report in the news section on our home page. Thanks to Cat Harvey and Laura Piercy for their work on this.
Things to consider if you are capturing the impact of involvement in research
Resource was added by: Bec Hanley
Guidance developed by the SLG - with input from patients, carers and researchers. This docuemnt is public and can be shared widely.
Impact of Alzheimer’s Society’s Research Network
Resource was added by: Bec Hanley
Great report giving evidence of different types of impact on different stakeholders.
Giving feedback to people who get involved about their contribution
Resource was added by: Bec Hanley
This resource, developed by researchers at the University of Hertfordshire, gives guidance to researchers on how to give feedback to people who get actively involved in research.
If you use it or pass it on to researchers you're working with please let the authors know, as they are keen to improve it.
Arthritis Research UK involvement scoring system
Resource was added by: Bec Hanley
This slide deck explains a system that Chris Macdonald and his colleagues at Arthritis Research UK have developed to enable them to attribute scores to every funded research application to reflect the nature of interaction with patients and the quality of that interaction.
Chris says that although it's not perfect, it means that when you combine the score with other searchable and filter-able criteria, you can correlate scores with institution, individuals, type of grant, research call it was awarded in etc. ARUK can then analyse, assess and identify who needs support, who they can use for case studies or speakers at training sessions, or if a centre needs a slap on the wrist and an offer of training. They can also look at what are the most common types of involvement in certain types research or look across the whole portfolio over time to see how KPI’s (such as a simple ‘have they involved’) change as the community is better resourced and informed.
CF Trust researcher feedback survey
Resource was added by: Bec Hanley
This survey is used to seek the views of researchers who have actively involved people with CF. Thanks to Lorna Allen for sharing this.
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.
PPI support researcher feedback survey – Parkinson’s UK
Resource was added by: Natasha Ratcliffe
This survey is sent to all researchers who receive Patient and Public Involvement support from Parkinson's UK to capture their experience of involvement and the impact it had on both the researcher and their research (impact questions are in section 4).
Impact on the development of research proposals – Alzheimer’s Society form
Resource was added by: Bec Hanley
This form is used by Alzheimer's Society to seek feedback from researchers about the impact of the involvement of people affected by dementia in the development of research proposals.
Thanks to Anna Grinbergs-Saull for sharing this.
Alzheimer’s Society survey sent to researchers
Resource was added by: Bec Hanley
This survey was sent to researchers to ask about the impact of the research monitoring role - this role is undertaken by people affected by Alzheimer's.
The responses informed the development of case studies.
Thanks to Anna Grinbergs-Saull for sharing this.