**Abstract:**
Public and Patient Involvement (PPI) is a collaborative partnership between patients, carers, members of the public and researchers to shape and influence research. The following article gives a brief overview of the “What”, “Why” and “How” of PPI and its relevance to TRNASLACORE and its wider network.
 
**What is PPI?**

Public and Patient Involvement, also known as PPI, is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them1. PPI is not simply communicating your research to the public (this is known as ‘engagement’), nor is it recruiting patients to take part in a research study (this is known as ‘participation’). Instead, PPI encompasses actively involving patients and/or members of the public in the research process2. PPI acknowledges and values the learning and expertise that comes with being directly affected by a particular disease, and that by forming collaborations with research teams, the decisions made during the research project will be well informed and patient-relevant.
What does PPI look like in lab-based research? Some examples include; assisting in setting research priorities, refinement of research proposals, interviewing research staff, advising the development of patient information leaflets, development of methodology, communicating your research to people without a scientific background etc3.
A fantastic case-study of meaningful PPI in lab-based research is described by Adele Connor and colleagues4. Adele’s project involves imaging patient-derived tumour model responses to novel drug combinations. Patient involvement was critical in this project, as the PPI contributors’ experiences with PARP inhibitors (PARPis) informed the researchers about side effects and tolerability. This led the researchers to expand their drug testing regimen to include multiple PARPis, considering both clinical efficacy and patient experiences. This article also provides a senior researcher perspective, as well as the perspectives of the PPI team and so is a must-read for an understanding of good PPI in lab-based research.
 
**Why do PPI?**

TRANSLACORE is “dedicated to the transfer of basic scientific findings in the growing field of protein synthesis into medical applications”. By engaging in discussions with those directly affected by cancer, PPI can provide a number of relevant research benefits, increasing the likelihood of scientific discoveries being translated into the clinic. PPI can:

- Prevent poor research questions by highlighting issues that are important to patients.
- Assist researchers in seeing the wider context of their research.
- Assist in interpretation of results, specifically highlighting findings that are relevant to the population studied.
- Assist in communicating the research and its importance to people in relevant patient organizations.
- Communicating the research in ways that are accessible to people without a scientific background, for example writing lay-abstracts for publications, describing results in down-to-earth terms etc.
- Increase recruitment to studies via advising and developing patient information leaflets without jargon in ways that are more likely to be received well by patients.
- Demonstrate evidence that you’ve engaged with stakeholders of a product (i.e. patients) if you are thinking of commercializing your research. This can make your innovation more attractive to investors.
- Enhance funding applications. An increasing number of funding bodies are requiring an aspect of PPI in grant applications so for some sources of funding, PPI is mandatory
- Beyond the practical benefits, interacting with the public and patients can remind researchers of the benefits of their work, providing additional motivation and job satisfaction.
 
How do I get involved?
Despite the clear benefits and relevance of PPI in research, there is often hesitancy among lab-based researchers about implementing it in their own projects. This is primarily due to a lack of practical guidance4. We present three practical tips for getting started with PPI.
1. The Digital Badge in Patient and Public Involvement (PPI) in Research is a validated micro-credential awarded online. This self-paced course is available to researchers at all career stages, both from University College Cork Ireland and other institutions, including members of TRANSLACORE. Interested participants can register here: https://ucc.instructure.com/courses/56578
2. The PPI Ignite Network Ireland is a partnership between 7 lead universities in Ireland and other national partners. This network aims to promote excellence and innovation in PPI. One branch of this network (University College Dublin) has a webpage with a variety of PPI resources (https://www.ucd.ie/ppi/). They provide information on nearly all aspects of PPI and is a great place to start if you’d like to learn more.
3. Finally, as with scientific research, collaboration is key in PPI. If you’d like to get involved in implementing PPI in your own research, draw on the knowledge of those who have utilized it in their own projects. Don’t hesitate to reach out and join the growing community of PPI in research worldwide.


**About the author:** Aideen McCabe is a final-year PhD researcher in the School of Biochemistry and Cell Biology, University College Cork, Ireland. Her project focuses on developing an early diagnostic test for ovarian cancer using long, non-coding RNAs. She is actively involved in Patient and Public Involvement (PPI) to make sure her research always keeps the patient at the centre. Aideen is supervised by Dr Kellie Dean and is funded Science Foundation Ireland (SFI) through the SFI Centre for Research Training in Genomics Data Science (18/CRT/6214). Her PPI activities are funded by the Irish Cancer Society. 


**References:**

1. NIHR. Briefing notes for researchers—public involvement in NHS, health and social care research. https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371#acknowledgements. Accessed 2024.

3. Health Service Executive Research and Development. 2021. Knowledge Translation, Dissemination and Impact: A Practical Guide for Researchers. Guide No 8: Patient and Public Involvement in HSE Research. Research and Development, Health Service Executive.

4. Dorris, Emma and Kroll, Thilo (2023): Public and Patient Involvement (PPI) Contributor Training Companion Manual. Figshare. Online resource. https://doi.org/10.6084/m9.figshare.22770086

5. Connor, A.E., Hughes, C., Schäfer, L., McNally, L., Raw, D.O., Bahramian, K., Carr, B., Dunne, I.H., Lysaght, J., Toole, S.A.O. and Simpson, J.C., 2023. Involving patients in healthcare research is well documented but can it work in lab-based research?. Research Involvement and Engagement, 9(1), p.90.



Public and Patient Involvement (PPI) is a collaborative partnership between patients, carers, members of the public and researchers to shape and influence research. The following article gives a brief overview of the “What”, “Why” and “How” of PPI and its relevance to TRNASLACORE and its wider network.

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PPI - Public and Patient Involvement

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 COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks. Our Actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers. This boosts their research, career and innovation. (www.cost.eu) | The TRANSLACORE Cost Action is bridging disciplines and expertise across Europe in order to advance an emerging field in cancer biology: translational control in cancer. It is providing a unique opportunity to understand this biological process leading to reconsider our view of gene expression control in this disease and deliver novel therapeutic opportunities.

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PPI - Public and Patient Involvement

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