Recommended sources of information & resources
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HRCIHRCI is a national leader in PPI. HRCI members sit at the interface of the health research community and the general public. Many of the member organisations were started by or heavily involve people affected by health conditions and all are focused on improving lives through research. They play a very important role in highlighting the perspectives of the people they represent in research and in ensuring that the patient and public voice is central to research decision-making. |
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PPI Ignite Network IrelandThe PPI Ignite network is funded by the Health Research Board (HRB) and Irish Research Council (IRC) and aims to promote excellence and innovation in PPI. It is a partnership between 7 lead universities (including RCSI – see below) and national partners including IPPOSI, Research Charities, and the HSE. It has a repository of information and resources. PPI Ignite Case StudiesGet inspired by network examples of different PPI approaches, across a broad range of research topics and methods. Visit https://ppinetwork.ie |
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IPPOSIIPPOSI – the Irish Platform for Patient Organisations, Science, and Industry. It has a repository of resources relating to PPI in research. Explore the PPI Hub and find out what others have been doing, contribute examples, and connect with members of the public and patients who have expressed an interest in becoming a PPI partner. Visit Cases Describing Public And Patient Involvement (PPI) Visit https://www.ipposi.ie |
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EUPATI EUPATI – the European Patients Academy on Therapeutic Innovation is a pan-European IMI project of 33 organisations, led by the European Patients’ Forum, with partners from patient organisations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies. It provides training for professionals, patients and patient representatives on the process of medicines research and development. Visit https://eupati.eu/ |
Other Useful Links
- NIHR INVOLVE – Established in 1996, this government-funded programme was the central portal for public involvement expertise, insight and research. It was part of and funded by the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. Please note the INVOLVE website is no longer maintained and supported and has been replaced by NIHR’s Learning for Involvement
- Campus Engage – How to Guides, as well as other tools and publications
- Irish Cancer Society – PPI in Research Guidelines
- MRCG – Developing a PPI Strategy: A Guide
- PCORI– Patient-Centred Outcomes Research Institute
- Public Involvement Impact Assessment Framework (piiaf) – Provides tools to assess the impacts of involving members of the public in their research in individual projects
- European Patient Forum Value & Handbook – For Project Coordinators, Leaders and Promoters On Meaningful Patient Involvement
- HRCI PPI Toolkit – To help identify important aspects to consider when thinking about/engaging in PPI, and practical advice on the first steps in PPI.
- NIHR – A practical guide to patient and public involvement in lab-based research.
Publications
- Differentiating between focus groups for patient engagement vs. qualitative research
- Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study.
- From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials.
- Reporting and appraising the context, process and impact of PPI on contributors, researchers and the trial during a randomised controlled trial – the 3D study.
- Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyse an award scheme for researchers.