Article

patient not taken seriously in meeting
patient not taken seriously in meeting

Understanding Tokenism in Patient and Public Involvement (PPI) Research

Oct 8, 2024

Lois Parri

,

UK

Senior GRC Consultant

Patient and Public Involvement (PPI) in research is a principle that emphasises the active engagement of patients and the public in the research process. This practice ensures that research addresses the real needs and concerns of those it seeks to serve. However, while the intentions behind PPI are noble, the execution sometimes falls into the trap of tokenism. In this context, Tokenism refers to the superficial inclusion of patients and the public, where their involvement is more about appearance than genuine engagement. Let's take a deeper look at the manifestations of tokenism in PPI research, its implications, and ways to foster meaningful involvement.

Tokenism occurs when patients or public members are included in research processes merely to fulfil a requirement or to give the appearance of inclusivity. Their input is often not genuinely valued, and their participation does not influence decisions meaningfully. This superficial involvement can take several forms:

Symbolic Participation: Patients and public members are invited to meetings but are not allowed to contribute meaningfully. They may not have access to the same information as other team members or may not be asked for their input on significant decisions. Members get a seat at the table but are voiceless.

Lack of Follow-Through: Suggestions and feedback from patients and public members are collected but not acted upon. Their contributions are noted but do not lead to any real changes in the research process or outcomes. Members get a seat at the table and have a voice, but no one listens.

Limited Roles: Patients and public members are assigned roles that have little impact on the research. They might be involved in minor tasks or consulted only on trivial matters, with the major decisions being made by researchers without their input. Members get a seat at the table, and people listen to what they say, but only on trivial matters.

Tokenism in PPI research can have several negative consequences that affect all stakeholders of research (participants, PPI members, researchers, funders, institutions and so on):

Erosion of Trust: When patients and public members realise their involvement is not genuinely valued, it can lead to a loss of trust in the research process and institutions. This erosion of trust can be challenging to rebuild and discourage future participation. This is especially challenging since PPI members are often individuals with previous experience with services that are not always pleasant.

Missed Opportunities: Genuine involvement of patients and the public can provide valuable insights that improve research relevance and quality. By involving people impacted by the research outcomes in the research process, such as service users in developing a new treatment, outcomes will be more relevant to those who matter the most. Tokenism prevents these insights from being incorporated, leading to research that may not fully address the needs and concerns of the community.

Disempowerment: Tokenistic practices can leave patients and public members feeling disempowered and undervalued. This experience can diminish their sense of agency and discourage them from engaging in other forms of civic participation. This disempowerment not only affects the individuals directly involved but also weakens the research's overall integrity and societal impact by reducing the diversity of perspectives and undermining the inclusivity of the research process.

Tokenism undermines the goals of Patient and Public Involvement in research, leading to disengagement and missed opportunities for meaningful contributions. By recognising and addressing tokenistic practices, researchers can foster genuine involvement that enhances their work's relevance, quality, and impact. True PPI is not just about ticking a box; it's about valuing and integrating the lived experiences and insights of patients and the public into the heart of the research process.

Originally written in

English