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How does PPI in research add value for charities?

Uploaded: 16th September 2020 | Topic: Examples of impact of PPI in research

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.

Macmillan Research Impact Framework

Uploaded: 7th August 2018 | Topic: Capturing the impact of involvement in research

Resource was added by: Bec Hanley

The Research Impact Framework (RIF) is a guide for Macmillan Research Grants Scheme applicants, and for researchers who are successful in securing a grant. Its purpose is to help maximise the impact of the research that Macmillan funds through our grants scheme. It is intended to help researchers plan, deliver and demonstrate research impact and to enable Macmillan to facilitate, understand and communicate that impact.

The goal and outcomes have been developed in partnership with people affected by cancer and are described in the Research Impact Framework. They focus on bringing benefit to people affected by cancer through improvements to treatment and care and through empowering individuals.

Giving feedback to people who get involved about their contribution

Uploaded: 19th April 2018 | Topic: Capturing the impact of involvement in research

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

Uploaded: 3rd April 2018 | Topic: Capturing the impact of involvement in research

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.

PPI support researcher feedback survey – Parkinson’s UK

Uploaded: 15th February 2018 | Topic: Feedback and surveys - research

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

Uploaded: 20th November 2017 | Topic: Capturing the impact of involvement in research

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.