Resource was added by: Bec Hanley
Guidance for people who want to share their lived experience, from Shaping Our Lives.
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.
Getting more people involved in research
Resource was added by: Bec Hanley
How can we involve more people in research, especially people who traditionally have not been involved? This paper summarises our discussions on this topic at the CRIG meeting on 15th June 2022.
PPI support request forms – CRIG guidance and examples
Resource was added by: Bec Hanley
What is this resource?
A template form for researchers requesting PPI support. CRIG members are approached by researchers who need help finding PPI members. Many CRIG members ask researchers to complete an application form to help them decide whether they will share the PPI opportunity with their network, and if so what information they will share. This document includes example forms from members.
Who was it developed by?
CRIG members.
When might it be useful?
Use this template to develop a PPI support request form to share with researchers in your field.
Induction for people who get involved
Resource was added by: Bec Hanley
What information do you send people who express an interest?
How do you ‘induct’ people when they first agree to get involved?
We talked about these questions at our meeting in August 2019. Answers in this paper.
Cancer Research UK Insights Panel Transparent Recruitment Process
Resource was added by: Alison Reeve
An example of document drafted by Cancer Research UK's Patient Involvement Team to support the recruitment of new Cancer Insights Panels (patient and carer groups). This outlines our process for recruiting more diverse groups of people.
Guidelines for involving people affected by asthma in research opportunities
Resource was added by: Bec Hanley
What is this resource?
Researchers wanting to involve Asthma UK's Research and Policy volunteers in their studies must read this guidance and complete a form. Approved studies will generally then be posted on the Research and Policy monthly Bulletin and social media, or in some cases on the website.
Who was it developed by?
Asthma UK (which is now Asthma and Lung UK)
When might it be useful?
Refer to these guidelines if you are looking to promote your service to researchers, outline the conditions of your support or establish 'rules' about your PPI programme.
Beyond the usual suspects – guide
Resource was added by: Bec Hanley
This guide offers practical help so that you can develop more inclusive involvement. It was written by Peter Beresford on behalf of Shaping Our Lives. There is also a research report, poster and DVD.