Resource was added by: Bec Hanley
Here's a recording of a webinar led by Diabetes UK, where they talk about thir experience of involving different minoritised communities in research supported by the charity.
The Power of Patient Advocacy in Genomics Course
Resource was added by: Natasha Ratcliffe
Training resource developed by Wellcome Connecting Science.
‘The Power of Patient Advocacy in Genomics – Influencing Research, Clinical Practice and Decision-Making’, has been specifically designed to inform and inspire anyone who is interested in learning more about the role that patient advocates can play in improving genomics research or medicine. It also encourages learners to reflect on any advocacy role they may be developing, and includes a peer-reviewed exercise to help them develop a plan to take this further.
Involving parents – good practice guidance
Resource was added by: Bec Hanley
The True Colours Trust commissioned researchers from the Cicely Saunders Institute at King’s College London, and the Universities of York and Leeds, to work with parents of children with life-limiting illness and bereaved parents to develop some resources that provide best practice guidance on working with parents. These resources are intended for use by anyone who consults parents and carers about their experiences.
There is a short film, an infographic, a set of worked examples and more information on this website page.
Involvement at a Trustee level
Resource was added by: Bec Hanley
Guidance from the Centre for Charity Effectiveness about involving people with lived experience at Board level.
Inclusive involvement pledge
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.