Resource was added by: Bec Hanley
The pledge is made up of 12 simple steps. The steps outline how people who are organising involvement activities can help and support people with lived experience in a positive, inclusive, and effective way.
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.
WHO framework for meaningful engagement
Resource was added by: Bec Hanley
This WHO framework for meaningful engagement of people living with noncommunicable diseases,
and mental health and neurological conditions might be useful if you need to reference influential bodies when you're trying to push for meaningful involvement, especially at an international level.
Involving people with lived experience in developing (or renewing) an organisational strategy
Resource was added by: Bec Hanley
This paper looks at how to involve people with lived experience in the development (or refresh) of an organisational strategy. It covers how you might do this, and lessons learned by those who have experience of doing this.
Involvement in governance
Resource was added by: Bec Hanley
There are some really useful resources and notes attached to the SLG meeting summary from 4th February 2021.
Training and learning for PPI members – what CRIG members are doing
Resource was added by: Bec Hanley
What is this resource?
This grid was developed in 2020 - it outlines what CRIG members had on offer in terms of training for Patient and Public Involvement (PPI) representatives/members. This is a historic document that has not been updated, but may be useful for reference if you're thinking about training for PPI.
Who was it developed by?
CRIG members.
When might it be useful?
Use it to see what other members are offering or to develop your own training.
Guide to reviewing grant applications for PPI members – MS Society
Resource was added by: Bec Hanley
What is this resource?
This distance learning pack details the MS Society’s approach to funding research and how lay members should review research grant applications. People affected by MS who want to lay review for the MS Society must complete this training pack.
Who was it developed by?
The MS Society.
When might it be useful?
Use this training pack for inspiration when developing your own training for lay members who will be reviewing grant applications, or to learn more about the MS Society’s approach to involving people in grant funding decisions.
Distance learning pack for PPI members – MS Society
Resource was added by: Bec Hanley
What is this resource?
This distance learning pack offers an introduction to research and PPI, aimed at people affected by MS who are interested in getting involved.
Who was it developed by?
The MS Society.
When might it be useful?
Use this training pack for inspiration when developing your own training for PPI members, or to learn more about the MS Society’s approach to involving people in research.
Motivating staff to keep involving people during the pandemic
Resource was added by: Bec Hanley
It can be harder to encourage and motivate staff to begin or continue to involve people when you can’t do this face to face. We talked about this challenge at our meeting in October 2020. This paper is a summary of what members are doing.
RNIB involvement impact report
Resource was added by: Bec Hanley
RNIB's report on how involvement has had an impact. Thanks to Nat Swiderska for sharing this.