Avoiding tokenism: ensuring meaningful Patient and Public Involvement and Engagement (PPIE)

Summary

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, explains why tokenism is a barrier to quality and safety. She shares five steps to help you avoid tokenism in healthcare and increase trust and engagement. 

Content

Tokenism in Patient and Public Involvement and Engagement (PPIE) occurs when involvement of lived-experience partners is superficial, symbolic, or performed to meet a requirement rather than to genuinely inform decisions. Avoiding tokenism is essential for building trust, achieving meaningful insights, and linking PPIE to patient safety outcomes.

Why Tokenism Matters

Tokenistic approaches frustrate participants, waste organisational effort, and risk decisions being made without critical perspectives. It can also undermine the credibility of PPIE work and damage relationships with lived-experience partners.

Steps to Avoid Tokenism

1. Assess readiness

Ensure the organisation is prepared to involve participants meaningfully. Tokenism often arises when involvement is reactive or rushed. Being ready signals respect for participants’ time and expertise.

2. Define clear goals

Participants should understand why they are involved and what impact their input will have. Undefined goals create confusion and disengagement.

3. Allocate resources

Provide adequate staff time, training, and reimbursement for participants. Tokenistic involvement often happens when organisations attempt engagement without proper support.

4. Prepare staff

Ensure staff facilitating PPIE understand principles, value lived-experience, and are equipped to act on insights. This prevents meetings or projects from being performative.

5. Close the feedback loop

Participants must see how their contributions influence outcomes. Without feedback, involvement risks feeling meaningless, reinforcing tokenism.

Resource highlight: The Avoiding Tokenism Checklist provides practical guidance to ensure involvement is genuine, inclusive, and impactful. Please download the attached guide to use in your work.

Quick reference checklist

• Assess organisational readiness
• Define clear involvement goals
• Allocate resources for meaningful participation
• Prepare staff to facilitate and act on input
• Provide feedback to participants

Avoiding tokenism enhances engagement, builds trust, and improves care quality and safety, while making PPIE genuinely impactful for all participants.

Share your insights

Have you been involved in Patient and Public Involvement and Engagement (PPIE) as a patient or part of the project team? What have you learnt rom your experience? Share your comments below (sign up here first for free) or contact the editorial team, at [email protected].

About the Author

Aurora Todisco, is the winner of the Advocacy and Patient Experience Champion Award at the National B.A.M.E. Health & Care Awards 2025. She 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.