Why Does Tokenistic Patient and Public Involvement (PPI) in Research Occur?

Tokenistic Patient and Public Involvement (PPI) occurs when patients and the public are superficially involved in research, performing it to meet formal requirements or create an appearance of inclusivity rather than genuinely incorporating their perspectives. Understanding the reasons behind tokenistic PPI is crucial for addressing and mitigating this issue. Let’s explore key factors contributing to tokenistic rather than authentic PPI, exploring weaknesses on both institutional and researcher levels.

1.       Compliance with Funding or Institutional Requirements

Many funding bodies and institutions require evidence of PPI in research proposals. Common forms of this are funding calls or journal scopes and values. Researchers may engage in PPI activities primarily to secure funding, publication, or a prestigious institution’s platform, treating them as a box-ticking exercise rather than a meaningful component of the research process. This focus on compliance can lead to tokenistic practices where patient and public input is formally recorded but not genuinely considered.

2.       Lack of Understanding and Resources

Researchers may not understand what genuine PPI entails and how to implement it effectively. Without proper training and awareness, they might not appreciate the value of deep engagement and may not know how to facilitate it. Even if researchers know how to do good PPI, engaging patients and the public meaningfully requires significant time and resources, including planning, coordination, and member support. Researchers often face tight deadlines and limited budgets, leading them to opt for more expedient, albeit tokenistic, forms of involvement that meet minimum requirements without substantial investment. This blend of inexperience and scarcity results in superficial involvement where the true potential of PPI is not realised.

3.       Power Imbalances

Traditional hierarchical structures in research can perpetuate power imbalances, where researchers hold most decision-making authority. This centralisation of power often means that patient and public contributions are marginalised or undervalued. In such environments, PPI is not a genuine effort to integrate diverse perspectives. To address these imbalances, it is crucial to democratise the research process. This shift involves sharing decision-making power and fostering an environment where all voices are heard and valued equally. Achieving this balance requires a significant cultural shift and the willingness of researchers to relinquish some control, which can be challenging.

4.       Cultural Resistance

Some research cultures may resist the integration of PPI, viewing it as an external imposition rather than an intrinsic part of the research process. This resistance often stems from a deep-seated belief in the superiority of traditional research methods and scepticism about the value of lived experience or expert-by-experience perspectives. Consequently, PPI is implemented minimally and superficially to conform to external expectations rather than being embraced as a core value. Overcoming cultural resistance involves changing attitudes and mindsets within research institutions, facilitated through education and advocacy, highlighting the benefits of PPI for research quality and relevance.

5.       Lack of Institutional Support

Institutions may not provide sufficient support or infrastructure to facilitate meaningful PPI. This can include a lack of dedicated PPI coordinators, insufficient funding for PPI activities, and an absence of policies or guidelines promoting genuine engagement. Efforts to involve patients and the public authentically can falter without institutional backing. There is a big disparity between parading and providing PPI.

6.       Measurement Challenges

The impact of PPI is often difficult to measure, and researchers may struggle to demonstrate its value. This can lead to a focus on easily quantifiable activities, such as the number of meetings held or participants involved, rather than the quality of engagement and its influence on research outcomes. As a result, PPI activities may become tokenistic, prioritising measurable outputs over meaningful involvement. Instead, embedding evaluation mechanisms within PPI processes, such as participant feedback and case studies, can help continuously improve and demonstrate its value.

These are clear motivations to engage in tokenistic PPI, which somehow feel cyclical and rooted in good intentions. Researchers raise awareness of the value of PPI, so Institutions incentivise using PPI in research, which puts the integrity of properly done PPI at risk. So, the next big question is, how can we avoid tokenistic PPI?