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What About Caregiver-Centricity?

When collecting the patient experience throughout a clinical trial, don’t forget to include the experiences of those closest to them.

In recruiting and retaining patients for clinical trials, caregivers are occasionally mentioned but rarely prioritized. We know, however, that caregivers provide a wide range of support to patients and have their own burdens and perspectives specific to and as a result of their caregiving role. They offer psychosocial and emotional support to patients in addition to physical support, so prioritizing them in patient outreach and retention strategies is both empathetic and smart.

November is National Family Caregivers Month. In honor of the more than 44 million caregivers in America, and in an effort to continue to prioritize clinical trial recruitability (instead of just site or protocol feasibility), we have highlighted 5 opportunities for clinical trials to be more caregiver-friendly.

1. Offer comprehensive, easy patient transportation options.

In many cases, but particularly in those when a clinical trial is recruiting patients who fall into an uncommon population (like those who are extremely sick, elderly, or pediatric), the caregiver is a requirement for trial participation if for no other reason than because the patient could not physically attend a study visit without getting a ride there. Offering patient transportation, especially in the form of reimbursed or paid-for ridesharing programs (like via our partnership with Lyft), removes one such burden from both the patients and the caregivers. In one study, we found as much as a 12% improvement in retention rates for sites that participated in the Lyft program. 

“When a patient puts their regular life on hold to attend a study visit, they are almost certainly affecting another person in their lives.”

2. Consider how caregivers play a role in your patients’ lives and adjust your trial accordingly if possible.

When a patient puts their regular life on hold to attend a study visit, they are almost certainly affecting another person in their lives. We have recruited children who needed a guardian with them at a visit, elderly who needed a caregiver with them, adults who needed someone to watch their children for them or who could only attend visits during school hours. Enrolling in a clinical trial is often a family decision for these reasons, and planning study visits with caregivers in mind will help with both enrollment and retention.

3. Work to make informed consent forms easy for everyone to read.

Getting through informed consent forms can be painful. Though industry has prioritized shortening them and improving their transparency, they remain long and include stilted language. Continually working to improve the forms themselves and developing a talk track that will help “translate” the forms into more common language is helpful not only to patients, but to the caregivers who often serve as the mediator between patients and their physicians.

4. Prioritize communication with advocacy groups when promoting your clinical trial.

Some patients are paralyzed with fear when they receive a new diagnosis. Some find information overwhelming or get burnt out doing research into what their condition means for their future. For these reasons, it’s oftentimes family members or caregivers who find clinical trial information and bring it to patients. Advocacy groups are trusted resources for patients and caregivers alike and can offer support to both parties. Providing them with clear, thorough information about your clinical trial, and using words like “you or a loved one” is more inclusive, and ultimately more patient-centric. 

“Caregivers are intertwined in patient lives and therefore should be part of every comprehensive, empathetic outreach and retention plan.”

5. Encourage patients and their caregiver or family to tour the site and meet their doctor.

In all communications with patients, mentioning their support system goes a long way to easing their minds. We often suggest that sites doing follow-up with referrals mention the availability of a site tour for the patient and their caregiver. Even if the caregiver doesn’t need to be present for each site visit, having them there for the initial visit and involving them in the process early will have a positive effect on patient attitudes, and in turn, study retention. Offering such a tour will demonstrate the empathy and caring we know patients and caregivers crave in their interactions with the healthcare system as a whole.

Ultimately, clinical trials are about the patients and the perseverance they show in helping industry find new, better, safer treatment options for heath conditions. The 5 opportunities above may have seemed like they were for patients and not caregivers – but that’s part of an important point. Caregivers are intertwined in patient lives and therefore should be part of every comprehensive, empathetic outreach and retention plan. Making clinical trials patient-centric means making them caregiver-centric, too. In this National Family Caregivers Month, and every month of every year, we hope we can continue to work toward eliminating as many burdens to clinical trial participation as humanly possible.