Why Caregivers Are the Key to Patient-Centric Clinical Trials

The clinical trial space has understood the importance of patient centricity for years. Until recently, however, there was little agreement as to what it truly entailed. 

When the world grinded to a halt amidst the pandemic, people had time to stop, look around, and think. It was an eye-opening period that sparked a great reprioritization. People looked at life in a new way after seeing friends and loved ones have their time tragically cut short. There was little tolerance to disruption of newly established routines, travel became limited to essential trips only, and decentralized trial designs quickly graduated from an emerging option to an essential strategy.  

At the time of this writing, things seem to be slowing down, but there remains resistance to returning to pre-pandemic norms. For families and caregivers, the demands of clinical trial participation seemingly pose an even greater burden than before. To avoid the headaches of study recruitment challenges, thoughtfulness must become part of standard operation procedure. 

The decision to participate does not lie solely with the patient.  

Caregivers bear an incredible responsibility, dedicating their lives to taking time off from work, managing appointments, transporting their sick relative, reading about new developments, and providing physical and emotional support around the clock—it is a labor of love. Because of this dedication, caregivers own a tremendous amount of influence. Will they be able to adhere to the commitments of participating in your study?  

As competition grows studies with more forgiving caregiver demands may experience easier enrollment for on-time study starts—it is no longer solely about the potential benefits of a therapy. 

How can the sponsor help to ease the impact of study participation? 

There are some simple ways in which sponsors can support patients and caregivers throughout their clinical study experience.  

• A little convenience goes a long way. Patient and caregiver relationships with local providers are special. An openness to partnering with local sites can allow patients to stay with the doctor who knows their condition best, see our Satellite Sites are the next rising start article.
• Easier travel makes participation possible. Allowing patients to keep their routines is ideal, but for the times in which travel is unavoidable, concierge services, travel reimbursement, and dedicated points of contact can be difference-makers.
• Involve the help of advocacy groups. These groups can help to assess and provide feedback on the lifestyle impacts of study protocols (e.g., number and duration of on-site visits), and may recommend studies to eligible members.  

Caregivers are subject matter experts and must be considered in study designs.  

When it comes to the patient and the everyday impact of their disease, no one knows it better. Precision can support you in improving caregiver thoughtfulness with protocol reviews, introductions to patient groups, and decentralizing clinical trial strategies—from wearables and investigational product shipping to e-consents and more.  

By implementing solutions that support those who support patients, we can create a more comfortable environment in which to explore life-changing therapies, ensuring everyone can make the most of the precious time we have together.