Building Equity and Respect Through PPI Partnerships

23 Oct 2025

The PPI-POWER project brought together researchers and family carers to explore how to make Public and Patient Involvement more equitable and effective. Through regular reflection and teamwork, the group built a lasting partnership based on trust, respect, and shared learning.

PPI-Power (Planning Our Work with Equity and Respect)

Project Summary

The project aimed to identify and document the positive and challenging issues of PPI working and strategies for making it work, and to identify and set research priorities and prepare a grant application. From the outset, the focus was on learning how to build and sustain genuine partnerships within PPI.

A diary study approach was used to document the strategies the team employed to ensure everyone was heard and involved, capturing how they built their partnership, their successes, challenges, and practicalities. Meetings took place approximately every six weeks, and at the end of each session, the group reflected on how they found preparing for and being part of the meeting. These discussions helped the team adapt their approach and strengthen collaboration over time.

The project achieved a range of significant outcomes. The team established and developed a sustainable PPI relationship and identified research priorities, which now align with several funding programmes. They successfully published an article in Research Involvement and Engagement titled PPI-POWER—Planning Our Work with Equity and Respect: A Case Study of PPI Working, which shares practical strategies and values-based approaches to PPI in everyday language.

Their work was also presented at the Family Carers Ireland Annual Conference, where it was positively received, and at the IASSIDD Special Interest Research Group in Profound Intellectual and Multiple Disabilities annual meeting, where Lorraine and Anne-Marie took part in a panel discussion on PPI working. The team is currently preparing a Horizon 2025 grant application focusing on quality of life for people with profound intellectual disability and their families. This project provided a strong foundation for that work and demonstrated the value of sustained, equitable collaboration.

In addition to its tangible outputs, the project offered key insights into what makes PPI partnerships successful. Regular reflection and considerate teamworking helped ensure that everyone’s perspectives were included and valued. The group found that careful coordination, respect, and protected time for open discussion were essential.

Their recommendations for other PPI projects include:

• Starting with PPI partners to ensure the work matters to those it aims to support.

• Ensuring a project is guided by shared values.

• Having a PPI coordinator on the team to support collaboration.

• Protecting time in meetings for PPI partners to share opinions and experiences.

It is clear from the project outcomes and future plans that the team developed an innovative and meaningful partnership built on equity, trust, and respect. Despite their diverse experiences, they worked together to find a common goal: advancing PPI research and improving the quality of life for people with profound intellectual disabilities and their families.

The PPI-POWER project shows how careful, values-based teamwork can create authentic, lasting relationships that strengthen both research and community impact.