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.
Principles of patient partnership – journal paper
Resource was added by: Annee Amjad
What is this resource?
A paper outlining a set of principles outlining how PPI collaborations should be carried out. These principles provide guidance on how to address key challenges when planning and conducting PPI in order to develop successful partnerships with patients.
Who was it developed by?
European Respiratory Society and European Lung Foundation
When might it be useful?
Useful reading about best practice and principles in PPI.
Patient Ambassador Programme – European Lung Foundation
Resource was added by: Annee Amjad
What is this resource?
An online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge needed to represent themselves and others successfully in involvement/ambassador roles.
Who was it developed by?
The European Lung Foundation
When might it be useful?
You may wish to refer people to the programme to help them develop the skills needed for PPI roles. Or use it for inspiration when developing your own training materials.
Research Champion’s pack – Crohn’s & Colitis UK
Resource was added by: Annee Amjad
What is this resource?
This pack helps Research Champions to understand how Crohn's & Colitis work, their strategy and mission and how they can get involved in research.
Who was it developed by?
Crohn's & Colitis UK
When might it be useful?
Refer to this pack if you're looking to develop materials to help PPI members understand your organisation and how they can get involved.
Rare Disease Research Network
Resource was added by: Annee Amjad
What is this resource?
A presentation outlining a project to build an online network of partnerships and resources to facilitate new patient-centred research opportunities for the rare disease community. The project will be co-produced by members of the rare community.
Who was it developed by?
Cambridge Rare Disease Network
When might it be useful?
Read about CamRARE's plans for building a new PPI network if you're planning to develop or grow PPI networks.
Research Network documents – Bowel Cancer UK
Resource was added by: Annee Amjad
What is this resource?
Bowel Cancer UK's Research Network helps to ensure the patient voice is heard throughout the research process. This document contains:
- Research Network member role description
- Research Network application form
- Research Network terms of membership
Who was it developed by?
Bowel Cancer UK
When might it be useful?
If you are developing documents to support the recruitment to your own PPI in research networks.
Insight Group Information Pack – Autistica
Resource was added by: Annee Amjad
What is this resource?
This information pack provides an overview of Autistica's Insight Group to help people decide if they would like to become a member. The Insight Group is a network of people with experience of Autism who are interested in influencing research, policy and strategy.
Who was it developed by?
Autistica
When might it be useful?
Refer to this document if you are developing materials to support networks of people who get involved in research to help them understand PPI and their role.
Research Toolkit – Autistica
Resource was added by: Annee Amjad
What is this resource?
The Research Toolkit is a collection of example documents to help researchers to follow best practice when producing documents used throughout the research process, such as participant information sheets and recruitment posters. The Toolkit aims to help autism researchers conduct inclusive, accessible autism research.
Who was it developed by?
The Toolkit was developed by Autistica and the documents included in it were submitted by researchers working across the UK.
When might it be useful?
Refer researchers developing documents for research to the Toolkit. You may also wish to refer PPI members to the Toolkit if they are helping researchers to develop documents for research.
Cost recovery for PPI in research
Resource was added by: Bec Hanley
What is this resource?
This CRIG paper offers four examples from members that undertake some form of cost recovery for supporting PPI activities. The paper includes details of each organisations’ rationales for charging, which services they charge for, who they charge and the amounts.
Who was it developed by?
Action for Pulmonary Fibrosis, British Society for Immunology, Cambridge Rare Disease Network and Cystic Fibrosis Trust contributed to this paper.
When might it be useful?
Use this resource if you’re thinking about charging researchers for support with PPI activities.
Researchers and Charities Partnering Guide – HRCI PPI Ignite
Resource was added by: Bec Hanley
What is this resource?
This guidance document is focused on charities and researchers working together on grant applications. The guide was produced following a workshop where charities and researchers discussed how to strengthen the relationship between them.
Who was it developed by?
Health Research Charities Ireland and PPI Ignite.
When might it be useful?
Read this document if you are partnering with researchers on grant applications to understand how best to work in partnership.