The Role of Caregivers in Patient Recruitment and Retention

Patients are the lifeblood of clinical research trial work and should be the focus. However, given the demographic shift to an older community, the increase in remote trials, and a push for more diverse trial participants, sites shouldn’t ignore the role of caregivers in the process. Incorporating caregivers, whether it’s a family member or home health provider, as a key stakeholder in clinical trial work reduces patient burden and maximizes opportunities for success. Optimizing this group’s positive influence and establishing successful trials necessitates strong CTMS. Caregivers can be integral – or detrimental – in disease treatment research and should be engaged as fully as appropriate given the patient’s needs.

Perhaps more than ever, patients will need to establish relationships with those running their trial. That often means that a caregiver will have a complementary relationship with those same research contacts. Clinical trials sites should consider how these groups affect their communications and develop operational models that maximize patient engagement in partnership with the caregiver community. 

Leverage texting and other outreach capabilities to keep patients and caregivers informed of what to expect and how to get in touch with staff even if an office is closed. Another tool is development of relationship trees that clearly align staff to a number of patients with whom they can establish connections. These relationship owners can provide support as patients navigate new devices and protocols associated with their trial. Adding caregivers to that mix might make the tree more complex, but ensuring their inclusion will yield fruit when it comes to retention efforts. 

For traditional trial models, missed visits mean lost revenue – by including caregivers into the process, visit rates will likely increase as will research business margins. Even when patients do come into your site for visits, remote access tools are still often a part of trial designs. Wearable technology, CTMS, eClinical applications, and eHealth systems all rely on in-home self reporting, which can be improved when caregivers are aware of the study protocol and can assist the patient in sharing their data. Another equally important consideration is how to address digital regulatory and document management in instances where the patients are receiving reporting support from a family or professional caregiver. 

Telehealth has brought healthcare directly into patients’ living rooms, and now remote trials are replicating those in-home supports to enhance research efficacy.  Decentralized trials address constraints including mobility, transportation or distance issues. These are the same issues caregivers typically support so understanding their needs, how they provide care, and their role in patient-centric clinical trials can maximize participation. Decentralized trials also enhance participation, retention, and protocol adherence, all areas that can be further enhanced by leveraging the support of trial participants’ caregivers.