When some patients enroll in an oncology trial, they’re hoping for a treatment that will extend their lives or help them achieve remission. In an earlier blog, we shared how three techniques based on behavioral science – setting expectations, rewarding participation, and promoting identity lock – can improve patient engagement in curative oncology trials. For this post, our focus is on palliative care trials.
For patients with advanced disease, palliative care studies are intended not to cure cancer but to improve quality of life. And with patients’ time at a premium, it’s even more critical to reduce the burden of participation.
As with curative oncology trials, strategic setting of expectations and promoting identity lock remain valuable techniques for improving patient engagement. From the very beginning, it’s critical to carefully consider – and accurately present – time commitments to participants with a heavy focus on limiting any negative surprises.
Research shows that bad news, especially when unexpected, can have an asymmetrically negative impact on subjective experience. In other words, if there is something difficult to share with a patient, provide that information upfront and all at once. As difficult as these situations are, it’s better to give the news all at once rather than delaying and delivering it over multiple interactions.
Incorporating identity lock-in palliative care settings is another way to improve an individual’s subjective experience throughout a study. How can you foster a sense that participants are fellow researchers in the trial? Effective communication is key. Sending reminders and sharing study-relevant information can help participants feel more engaged. These communications help them understand how their contributions can have a lasting impact on the clinical understanding of oncology. They also increase the frequency of touchpoints with participants outside of required instruments and study visits, without added burden. That can be especially helpful during long gaps in which participants might otherwise become disengaged from study activities.
For palliative care trials, it’s especially important to reduce friction – minimizing the time and effort patients must invest to participate. Mobile technology can play a key role. For example, virtual visits can help curb the need for participants to travel to site visits. Mobile technology can also streamline and simplify information capture, so it’s faster and easier to complete instruments and monitor for potential adverse events. These conveniences also can make a big difference in how onerous a participant perceives the trial to be.
People usually join palliative care trials to improve the quality of what they know is limited time. Setting expectations, encouraging identity lock, and reducing friction help ensure that these trials provide more benefit than a burden to patients.
For more on this topic, view the Datacubed Health webinar, Rethinking Patient Engagement in Oncology Studies.