In previous blog posts, we’ve shared insights for improving engagement in both curative and palliative oncology trials. For this post, we’d like to focus not on patients but on the people who support them: caregivers.
More than in many other therapeutic areas, oncology trials require the heavy involvement of caregivers. Given the unique role caregivers play in clinical trials, their needs are often quite distinct from that of patients. Therefore, what works to engage patients may be less effective with their caregivers.
How can we take better care of caregivers in oncology trials?
Imagine walking in their shoes
When considering caregivers’ needs, it is critical to consider the physical, mental, social, and emotional work involved in supporting someone with cancer. That labor likely includes coordinating medical appointments, providing transportation, handling medical bills, and supporting the usual roster of day-to-day tasks.
Imagine how it would feel if a clinical trial added more burden to an already long to-do list. For example, that burden could include extensive visits to an investigative site. Such visits are especially inconvenient if the site is a significant distance from where the patient and/or caregiver live. The burden could also come in the form of paperwork that piles up because the person with cancer may not always be able to stay on top of the study’s requirements.
Find and eliminate friction
In-person visits can introduce logistical challenges that consume valuable time and money. Because caregivers are usually the ones responsible for preparing the patient, undertaking the necessary travel and accompanying the patient for every visit, clinic visits can end up being very taxing on caregivers.
Mobile technology makes it easier for patients to join a trial and easier for caregivers to support them through every phase. An eCOA/ePRO platform that enables virtual visits can dramatically reduce the number of required in-person visits. Similarly, a mobile platform can keep caregivers informed about the status of a trial and the participant’s role in it. These alerts could include reminders about scheduling virtual or site visits, completing instruments, and essential study updates. These capabilities can help make trial participation significantly faster, easier, and more manageable for patients and caregivers alike, increasing the likelihood that the patient stays active and compliant.
Value caregivers’ time
As with patients, setting expectations with caregivers is critical. When you exceed an expectation you’ve set, caregivers will feel more positive about their supportive role in the trial. Setting an expectation and then falling short in meeting it can have an even more pronounced negative effect on caregiver sentiment.
In designing an oncology study, ensure the needs of caregivers are considered, especially when it comes to respecting their time. Set the expectation that every visit or interaction with the patient will be meaningful and critical to study progress. Then meet those expectations with convenient, well-designed, and – yes – low-friction experiences.
Ultimately, those who are running oncology studies share many of the same goals as oncology caregivers. Whether a trial is working to develop a cure or seeking to provide greater comfort, demonstrate care for all the people involved.
Check out this webinar: Rethinking Patient Engagement in Oncology Studies for a deeper dive. And if you want to see how Datacubed addresses the needs of patients, caregivers, sites, sponsors and CROS watch our brief demo video.