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.
Nine Basic Requirements for Meaningful and Ethical Child Participation
Resource was added by: Bec Hanley
Save the Children has published a new and updated version of the Nine Basic Requirements for Meaningful and Ethical Child Participation. This is a key tool to guarantee high-quality child participation and will help to advance children’s participation rights in any initiatives with children. The Guide has evolved for over two decades and is based on what children have shared with adults over the course of many years. The material includes checklists and basic tools and is presented in an easy-to-read, colorful manner.
The guide is also available in French, Spanish and Arabic .
Also included within the tools is a preliminary set of ‘mini guides’ related to:
• Planning events with children
• Moderating events with children
Toolkit – Involving YP in research
Resource was added by: Maddie Still
Created by Generation R Alliance/eYPAGnet, this Toolkit will help you set up and run a Young Persons Advisory Group, allowing the voices of children and young people to be heard in research.
Includes useful documents and resources to support YP engagement in research involvement
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.
Toolkit for charities beginning a PPI relationship
Resource was added by: Bec Hanley
What is this resource?
A toolkit to help research charities plan for a first involvement meeting with patients and carers.
Who was it developed by?
Health Research Charities Ireland and Trinity College Dublin.
When might it be useful?
Use this toolkit if preparting to set up and meet with a PPI group for the first time.
PPI guidance for researchers – different organisations’ approaches
Resource was added by: Bec Hanley
What is this resource?
A list of various organisations' PPI guidance for researchers.
Who was it developed by?
Heather Cooper (CRIG member).
When might it be useful?
You may wish to share the various guidance documents with the researchers you are supporting with PPI. Or use them as inspiration when developing your own guidance.
Dementia Experience Toolkit
Resource was added by: Bec Hanley
Great resource co-produced by the Alzheimer's Society and people living with dementia. Useful if you're working with people with a range of conditions.
Digital campaigning and the voices of people with lived experience
Resource was added by: Bec Hanley
A really interesting report from the Social Change Agency about how digital campaigning can disenfranchise those with lived experience. Comes with a toolkit to try to address this.
Positive risk-taking: from rhetoric to reality
Resource was added by: Mandy Owens
A discussion paper from Steve Morgan and Nick Andrews for the The Journal of Mental Health Training, Education and Practice.
Purpose – For health and social care services to become truly person-centred requires a fundamentally positive mindset from professionals and care workers, and a willingness to take some risks. The purpose of this paper is to explore how this will apply to delivering dementia services, where almost all of the initial impressions are of deficits, disability and disadvantage.
Patient involvement toolkit for researchers – CRUK
Resource was added by: Bec Hanley
What is this resource?
A toolkit containing guidance, tips and templates to help researchers plan, deliver and evaluate patient involvement.
Who was it developed by?
Cancer Research UK.
When might it be useful?
Share the resource with researchers or use it for inspiration for developing your own guidance for researchers.