There are many resources available to assist and guide researchers with their PPI initiatives. In this section you will find:
Terminology explained
The European Patients’ Academy Glossary
The European Patients’ Academy Glossary provide a description for key medical and scientific terms.
National Institute for Health Research – INVOLVE
The INVOLVE group provide descriptions for terminology commonly encountered in research. Please note that although this is a useful resource INVOLVE is no longer actively updated or supported
Writing for a general audience
This resource provides guidance on writing in an accessible format for the general public.
National Adult Literacy Agency
The National Adult Literacy Agency have useful tips for writing in a clear and understandable format.
National Institute for Health Research – INVOLVE
The INVOLVE group have guidance on how to write plain English summaries. Please note that although this is a useful resource INVOLVE is no longer actively updated or supported
Health Research Board (HRB)
The HRB provide information on patient and public involvement, particularly in the context of public reviews.
Irish Platform for Patient Organisations, Science and Industry (IPPOSI)
IPPOSI have developed a helpful charter for patient involvement in Ireland.
Campus Engage Ireland
With an objective to promote civic and community engagement, the Campus Engage Group (Network of Irish Universities), along with a consortium of researchers, policy makers, funding agency personnel and community partners have developed a number of informative “How To Guides” to provide guidance around facilitating engaged research.
UK Standards for Public Involvement
The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research.
Developed over three years by a UK-wide partnership, the standards are a description of what good public involvement looks like and encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.
The standards are for everyone doing health or social care research and have been tested by over 40 individuals, groups and organisations during a year-long pilot programme. They provide guidance and reassurance for users working towards achieving their own best practice.
National Institute for Health Research
The National Institute for Health Research are a UK funding body for healthcare research. They provide useful resources to support initiatives which embrace PPI.
The PPI Ignite Network has very useful resources for researchers on PPI and we strongly recommend that you visit their website. The network promotes excellence and inspires innovation in public and patient involvement (PPI) in health and social care research in Ireland.
At the centre of the PPI Ignite Network are seven Universities (Lead Sites), providing the training, support and guidance to help researchers involve public and patients, right from the start of a research idea. We also recommend contacting the lead site in your host organisation for support.
Health Research Charities Ireland (HRCI)
HRCI is the national umbrella group for medical research and patient support charities in Ireland. The HRCI champions and promotes meaningful patient and public involvement in research. They host the Shared Learning Group, where medical research and patient support charities hold active discussions on PPI and its challenges. They have also prepared a guidance document on how to develop a strategy for PPI in research activities.
Irish Platform for Patient Organisations, Science and Industry (IPPOSI)
IPPOSI is a patient-led organisation which champions public and patient involvement in health research and practice. IPPOSI also offers training for patients in the area of health research.
This website offers practical guidance about how to involve patients and the public in laboratory based research.
A lot of guidance has been written about how to actively involve patients and the public in clinical research, and evidence is growing about the value of this. But there’s very little that is specifically aimed at researchers who work mainly in a laboratory, with very little or no contact with people affected by the condition they are studying
Cancer Research UK (CRUK)
CRUK have developed a PPI toolkit for researchers which can offer guidance and tips for undertaking PPI.