Oncology trials are among the most complex and expensive when it comes to clinical trials. As a result, they pose a challenge to patient engagement and retention. Oncology trials generally fall into two categories: palliative care and curative intervention trials. This blog post will focus on the unique aspects of curative trials and will discuss strategies that can be used to improve patient engagement in these studies.
Curative trials are studies aimed at employing interventions that can lead to remission or a significant extension of lifespan. Because this goal involves treating the illness in an aggressive manner, these studies typically involve intense interventions, significant side effects, and potentially negative impacts on a participant’s quality of life. All the while, of course, there’s no guarantee of a positive outcome. These factors can make it difficult for participants to maintain motivation and engagement – especially over a long period.
What can curative oncology trials do to overcome these challenges? Behavioral science points to three research-based ways to increase participant engagement in curative oncology trials.
- Set expectations.
Neurobehavioral research has found that people don’t experience rewards and losses in a vacuum, but rather in relation to a given reference point or expectation. For example, imagine two patients arriving at a clinic for a visit.
To the first patient the study staff says, “We’ll be with you in just 15 minutes.” Instead, 30 minutes pass before the participant sees a doctor. The participant will experience this delay as a significant, subjective loss.
To the second patient the study staff says, “We have some bad news, and we’re really sorry. You’ll have to wait here for 45 minutes.” But after just 30 minutes, the participant is called back. This participant will experience the same 30-minute wait in a much more positive light.
Consider how you can set and communicate expectations to increase rewards and minimize perceived losses.
- Reward participation.
Rewarding participants is another tool for encouraging compliance. These rewards should be designed based on the neurobiology of decision-making. The human brain has several learning circuits, each of which is best engaged at a specific timeframe relative to the learning event in question.
Think about a task like completing an instrument It’s vital to reward participants immediately after the task is completed. But it’s also important to reward them at longer timescales as well;– for example, when a participant reaches a certain study milestone. Even the anticipation of receiving a larger reward at the end of the study can be very motivating. In addition, rewarding participants at staggered intervals reduces their perception of the “cost” associated with compliance.
- Promote identity lock.
Behavioral science research confirms what humans intuitively understand: People take significant pride in being part of a social group. In a curative oncology trial, this desire can help strengthen participant engagement through a concept known as “identity lock.”
When someone comes to see participation in a trial as part of who they are, they become less likely to abandon it. Moreover, being part of this social group comes with social norms – certain behaviors that are required to remain in the group. In a curative oncology trial, participants and study staff become part of a social group, and compliance with study endpoints becomes a social norm for remaining in this group. Fostering this sense of purpose and active participation makes compliance less onerous. Done effectively, it can even make it more difficult to be non-compliant.
For more on this topic, view the Datacubed Health webinar, Rethinking Patient Engagement in Oncology Studies.