Collaboration is key, relationships matter

By Claire Riordan - CURAM and Edel Murphy - PPI Ignite Network

We have been involved in the growth of PPI in Ireland, which has expanded significantly in the last 10 years. During this time, we have seen a shift from isolated pockets of good

practice within individual research groups to much broader incorporation of PPI approaches across many research domains, alongside evolving institutional policies and practices. We have also witnessed a significant shift in understanding among the research community of the value of the meaningful integration of patient voices into the design, delivery, and dissemination of research. It’s no longer a box-ticking exercise or something that exists only on the periphery. As we continue to develop our skills in this space, one of the most important lessons we’ve taken on board is that no single researcher, institution, or patient group can do this well in isolation.

In this blog we share three ideas that we've learned to live by when it comes to PPI planning.

1. Use your time well

The good news for anyone starting out is the fact that we do not have to start from scratch. While there may be specific pioneering aspects to your work, such as a new research area, the testing of new methodologies or treatments, or partnering with a new community of lived experience, it is likely that others have navigated similar paths before you.

Recognising this is important, particularly in busy and resource-constrained environments. Taking the time to connect with others, to learn from their experiences, and to build relationships early can save significant time and effort later. Collaboration helps avoid duplication, reduces pressure, and allows you to draw on existing knowledge and peer support rather than carrying the full burden alone.

Effective PPI is, at its heart, about relationships. And relationships take time. A common

barrier to embracing PPI that researchers cite is the scarcity of time, so spending the time that is available to building a relationship rather than developing yet another resource is a wise decision.

2, Don’t re-invent the wheel

Guidance on PPI is extensive. Greenhalgh and colleagues (2019) identified 65 frameworks

supporting PPI in research, many of which are only used by their developers. Similarly, when the Patient Experience Library reviewed publicly available PPI toolkits, they found 536 resources. Their report—Toolkits Mountains: How we scaled a mountain of guidance on patient and public involvement, and what we saw from the top—highlights just how much material already exists. The resources, tools, and lived wisdom they others created are available to us and so our responsibility is to build on that foundation rather than reinvent it.

Reviewing available resources and identifying those relevant to our work has been fruitful. We find working with our PPI partners to adapt and expand existing resources to ensure that they are meaningful and relevant to our work is hugely beneficial. This process not only saves time but also strengthens relationships, as it values the input, expertise, and lived experience of all involved.

Collaboration also brings responsibility. When adapting existing resources, it is important to acknowledge the original creators and provide links to the source material. This is not just good academic practice, it is a way of recognising the contributions of others and

maintaining trust within the PPI community.

Acknowledgement reinforces relationships and supports a culture of generosity, openness and respect. It signals that PPI is a shared endeavour, built collectively over time rather than owned by any one group.

3. Learn from others, share what you learn

PPI brings together people from diverse backgrounds, with different perspectives, types of knowledge, and levels of experience. Significant benefits can be gained from sharing

knowledge, skills, and expertise. In environments where collaboration is actively fostered,

shared learning thrives. This is particularly true in informal settings, where open and honest discussions can take place, allowing people to explore both the strengths and challenges of different approaches.

Shared learning in PPI is inherently multi-directional. Everyone involved, be they

researchers, contributors or practitioners, has something to offer. Strong relationships create the conditions for this exchange, enabling people to feel comfortable sharing insights, asking questions, and learning from one another.

For the research community, for policymakers who shape the funding and regulatory

landscape, and for the patient advocates who give so generously of their time and

experience, the message is the same; meaningful PPI requires collective commitment and an openness to learn from those who have done and continue to do this well.

Refs :

Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, Chant, A. 2019.

Frameworks for supporting patient and public involvement in research: Systematic review and codesign pilot. Health Expectations

Patient Experience Library. 2023. Toolkits Mountain. How we scaled a mountain of guidance on patient and public involvement, and what we saw from the top. The Patient Experience Library.

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