atient and public involvement (PPI), or patient engagement (PE), is a positive development that aligns with broader patient empowerment movements. People affected by health conditions should have a say in the decision-making processes that will impact them. Moreover, when patients are involved in developing and testing new healthcare solutions, outcomes should be more patient-centered. Why has this knowledge not yet been translated into widespread action? This article explores why we seem stuck on the PPI adoption curve and how to get moving again.

A behavioral science-informed approach

The plethora of terminology certainly does not encourage new entrants. Involvement, engagement, PPI, PPIE, co-creation, co-design; all these unfamiliar terms can overwhelm the uninitiated. Despite this semantic barrier, a community of enthusiasts and innovators has emerged. However, there is a risk that these innovators and early adopters operate in PPI echo chambers. Behavioral science may offer some clues as to why involving patients is not yet a broader norm. The COM-B model posits that all three elements of capability (C), opportunity (O), and motivation (M) are required for behavior change (B) to occur.

Capability

Training in PPI is widely accessible and often free (see Table 1). Indeed, there is already so much guidance on how to do PPI that it has been dubbed a “toolkit mountain.”

Table 1. Examples of the available Patient and Public Involvement training resources.

Despite all this training and guidance, do we know what we are trying to do? “Task ambiguity” is a term behavioral scientists use when a goal is sufficiently vague to leave an actor unclear on how to proceed. Learning from people with prior experience can be a huge help here. There are networks, conferences, and communities dedicated to advancing patient and public involvement and engagement with members happy to share their experiences and welcome newcomers, e.g., the DIA Patient Engagement Community and Patient Engagement Open Forum.

Opportunity

Few of us are sole operators; we work in large organizations where strategic priorities and resource availability frame our opportunities. While involving patients in research can be far less resource-intensive than many other aspects of medicine and healthcare, it still has an opportunity cost, and initial efforts require some investment in processes and systems. However, using existing toolkits and guidance and seeking support from the patient engagement community can help plan PPI efficiently within even the tightest budgets.

Motivation

Perhaps the most promising of the three behavioral change factors is motivation. One approach to increasing PPI would be to require and regulate it. Such external motivation has been partially successful with plain language summaries, with many funders and publishers now requiring their creation. There is, however, a risk that this stick rather than carrot approach might result in tokenism where minimal action is motivated by sanction avoidance. Such superficial execution of patient engagement, in addition to likely being ineffective, could drive criticism of the practice more generally.

We will all have different reasons for wanting to engage or not with PPI, from simply feeling that it is the right thing to do to hard-headed profit motives. Patient involvement has been recognized as part of the societal component of the ESG (environmental, social, and corporate governance) agenda, potentially bringing greater interest from senior leaders within pharma and the investment community. Any successful efforts to increase PPI activity must appeal to the values of key stakeholders.

One of the most powerful persuasive tools is bringing patients into the room to tell their stories. Nevertheless, there will invariably be demands to see data. We have yet to reach a consensus on how to demonstrate the impact of PPI. However, we can do better in thinking about what we expect the impact of our engagement activities to be and prospectively collecting, sharing, and peer-reviewing evidence.

Barriers and Frictions

In addition to the factors motivating people to undertake PPI, we must consider what stops them. There is rarely only a single barrier. Many small frictions can combine to make change unappealing despite adequate capability, opportunity, and motivation. Innovation expert David Schonthal and organizational psychologist Loran Nordgren’s book, The Human Element, described four deeply ingrained, invisible forces in our human makeup that drag on the forward momentum of innovative ideas: inertia, effort, emotion, and reactance. By acknowledging these frictions, we can anticipate and tame them.

Inertia, the behavioral tendency to keep doing what you already do, is well documented in many contexts. Repeated exposure to ideas and eventual familiarity can reduce inertia—another reason to keep sharing our PPI experiences.

Effort may encompass cost together with physical and cognitive effort. Challenging the status quo can be an underestimated drain on our resources.

We like to think of ourselves as rational actors, but emotions like fear and anxiety do play a part in decision-making. We can lessen our fear of getting PPI wrong by starting small and testing the waters with pilot studies, increasing familiarity, and reducing risk.

A Call to Action

We may never convince everyone of the need for PPI. Let’s ask those with genuine interest in PPI what stops them from adopting it. What are their concerns? What can we do to help?

As individuals, we can join the networks and communities that already exist, or we can start new local communities. We can educate ourselves and apply our learning to our contexts, sharing our experiences and learning from others. If you are already working on projects shaped or cocreated with patients, consider sharing your experience and measuring the impact and value. Good-quality data is a vital persuasive tool in the world of decision-making.

We do not need more guidance and toolkits. By starting small, refining approaches, and sharing experiences, we believe that individuals and organizations have the power to overcome friction and reignite the forward momentum of patient and public involvement in healthcare.