In the U.S. there are nearly 40 million caregivers providing support to the 16.6% of American adults aged 18 and above who have a disability or illness. Taking on the role of caregiver is a significant responsibility as you have to juggle the needs of the person you are caring for with your own personal life – work, hobbies, and other commitments. But you selflessly put your life on hold to care for your loved one. When it comes to the success of a clinical trial, the caregiver’s role is crucial. With the proper support, caregivers can help prevent dropouts, increase patient satisfaction and retention, and keep the study on track.
As it relates to a clinical trial, what does a caregiver’s experience actually look like and how can we as an industry better support them and the patient?
Burdens
To better understand a caregiver’s clinical trial journey, it is critical to acknowledge the challenges that come with it. The responsibilities can be taxing, placing a physical, financial, and emotional toll on the caregiver.
Time Away from Work & Personal Responsibilities
In many cases, caregivers may have to take time off work to provide necessary care and support to the patient. This can create a considerable burden on the caregiver, both financially and emotionally. In addition to the loss of income, caregivers may also experience stress and anxiety as a result of the added responsibilities.
Incurred Costs
Clinical trial participants sometimes require travel and lodging in order to participate in the trial. The cost of hotel rooms and meals can add up quickly, especially if they are not immediately reimbursed or provided with a stipend. If the caregiver has other family members or children, they may have to pay out of pocket for childcare or pet care while taking care of the participant in the trial. Over time, these expenses can accumulate, adversely affecting the caregiver’s financial well-being.
Transportation
According to our data, the average distance traveled to reach an oncology clinical research site is approximately 57 miles, which imposes a significant travel burden on participants. This can be particularly challenging for caregivers who may have to make arrangements to accommodate the travel time. If the caregiver is using their own vehicle, the costs associated with gas and maintenance can be substantial. If they are relying on public transportation, this may increase their travel time and also add additional challenges, particularly if the participant requires special care or transportation.
Organization
Being a caregiver involves not just physical labor but also mental organization. Depending on the age or health of the person being cared for, the caregiver may be responsible for keeping track of appointments, medications, doses, reactions, symptoms, reporting, phone calls, emails, and more. Staying on top of these tasks is crucial, but it can be overwhelming for caregivers.
Patient Advocacy
Typically, caregivers are obligated to know the patient’s medical history and ask the right questions. They keep track of the symptoms and side effects and advocate for their loved one to make sure they are being cared for in the best way during their study.
Simplifying the Journey
As an industry, we are constantly working to simplify the journey of participating in clinical trials for everyone involved. So, what are ways we can better support patients and caregivers?
At Greenphire, we are dedicated to building solutions that ease the process of participating in a clinical trial. While the focus is typically on the participant, our solutions help to simplify the experience for caregivers as well.
Easing the Financial Burden
Our ClinCard participant payment solution ensures expenses are reimbursed in real-time. The flexible payment methods (card, bank transfer, digital payments) ensure that participants and/or caregivers are receiving funds in a way that is simple and preferred to them. Through our web and mobile app, GreenSpace, patients and caregivers have real-time access to the participants’ trial-related financial information, with the ability to upload receipts to their profile for reimbursement (e.g., meal expense). This helps create a level of transparency that alleviates the stress of tracking and using funds.
Providing Logistical Support
Our global travel service, ConneX, ensures that all logistics are funded up front and arranged per specific patient needs, removing both the out-of-pocket expense and administrative burden from the participant and caregiver. The GreenSpace app also gives patients and caregivers complete visibility into and control over their travel. Notifications and reminders help them stay informed and organized while 24/7 support is available to address questions or requests, ultimately providing patients and caregivers with peace of mind.
Ensuring Ease of Communication & Access
Research shows that “being informed of clinical research progress on a regular basis” ranks very high on what is most likely to keep study participants enrolled until the end. Offering a mobile app can help in engaging patients and caregivers on a deeper level, providing easy access to things like finances, trial-related resources and insights, surveys and other trial activities. With the ability to perform tasks right from their homes, it reduces the burden of the caregiver and provides overall flexibility. According to CISCRP, individuals who have not participated in clinical research consider “availability of mobile applications” as “very important.” Our GreenSpace app is one such solution that provides participants and their loved ones with a centralized experience that supports them throughout their entire journey.
Discover how Greenphire can make the clinical trial journey easier for everyone involved – every step of the way.
- Learn about our participant-facing application, GreenSpace
- Take the next step – Request a demo
