How to avoid the 7 most common mistakes in PPIE

Summary

Patient and Public Involvement and Engagement (PPIE) can bring valuable lived experience into decision-making, service improvement, research, and patient safety work. However, even well-intentioned organisations can make mistakes that reduce the impact of involvement and leave participants feeling undervalued.

hub Topic leader, Aurora Todisco shares seven of the most common pitfalls and how to avoid them.

Content

1. Involving people too late

One of the most frequent mistakes is inviting lived experience partners into a project after key decisions have already been made. Meaningful involvement works best when people are engaged from the earliest stages of planning and design.

2. Being unclear about purpose

Participants should understand why they are being involved and what influence they will have. Clear objectives help manage expectations and create more focused and productive engagement.

3. Failing to provide support

People may need accessible information, training, adjustments, or practical support to participate fully. Assuming everyone can engage in the same way creates unnecessary barriers.

4. Not budgeting appropriately

Meaningful involvement requires resources. Organisations should plan for participant payments, accessibility requirements, training, and staff time from the outset.

5. Overlooking diversity

Relying on the same voices repeatedly can limit insight. Effective PPIE actively seeks diverse perspectives, particularly from communities who are often underrepresented.

6. Treating involvement as a one-off activity

PPIE should not be viewed as a single meeting or consultation exercise. Building ongoing relationships with lived experience partners creates stronger trust and better outcomes.

7. Failing to provide feedback

Participants should always know what happened as a result of their contribution. Closing the feedback loop demonstrates respect, builds trust, and encourages future involvement.

Conclusion

Most PPIE challenges are avoidable with thoughtful planning and a commitment to partnership. By addressing these common mistakes, organisations can create involvement opportunities that are meaningful, inclusive, and capable of driving real improvement.

About the author

Aurora Todisco is a Finance, HR, and Governance Development Lead with over 21 years of experience, including the past 9 years dedicated to the health and social care sector. She brings a unique blend of strategic expertise and lived experience to her work, with a strong focus on improving patient safety, health equity and quality of care. Aurora holds a Postgraduate Diploma in Advanced Primary Care Management, which informs her systems-level approach to healthcare leadership. Since 2021, she has co-produced initiatives with nearly 90 national stakeholders, driving forward accessibility inclusion, and trauma-informed practice across NHS, academic and research settings. Actively involved in quality improvement programmes, accreditation panels and advisory groups, Aurora is passionate about amplifying patient and public voices to shape meaningful, system-wide change. Her work champions the power of real patient stories in creating campaigns that lead to safer, more equitable care for all.