When a spouse or family member has a chronic, life threatening, or debilitating illness, there is often a ripple effect that puts the onus of responsibility onto people with very little training and, in many cases, very little income to assist in solving day to day challenges. From a clinical research perspective, we see only some of it. Family member caregivers are often the only individuals who can provide transportation, adherence to medical regimens, timely documentation of self reported symptoms, or even interventions in the case of life threatening occurrences.
Therefore, from the perspective of engaging patients for research, it’s important that the clinical research community puts a heavy emphasis on communicating effectively with caregivers. In our conversations with organizations like The Caregiver Action Network, Caregiver Support Services, and The National Alliance for Caregiving, we found that one of their common pain points was legitimizing the voice of the caregiver in clinical research. This is not a far cry from their main mission statements, which are generally derived from a lack of services and support to help empower those affected by the condition of their loved ones.
At Leapcure, we have quickly opened the dialogue with caretaker organizations. The earlier we can partner, the better we can utilize data to empower their organizations and constituents to have a stronger voice in the research community. At the end of the day, it will likely take both patient and caretaker behavioral data to help begin accelerating research across all debilitating indications.