If You Build It, They Will Come: Patient Preferences in Clinical Trial Participation
Building patient-centric processes that make participation appealing and convenient should result in greater patient engagement. A survey by Rare Patient Voice found that patients and family caregivers have some strong preferences regarding clinical trial participation that, if built into the research process, could result in greater participation.
Key takeaways:
• Patient recruitment is an essential step in clinical research
• Participation in clinical trials can be a burden on the patient and their family
• Making participation more appealing by taking more of the burden off patients and families may result in greater engagement
Whether it’s the legendary story of the Alpine train tracks between Venice, Italy and Vienna, Austria being constructed before there was even a train that could make the treacherous trip, or the similar theme of the hit Kevin Costner film “Field of Dreams,” the notion of “If you build it, they will come,” is a powerful one.
Recruiting patients for clinical trials is one of the most critical steps in research towards the development of new treatments and cures, and building patient-centric processes that make participation appealing and convenient should result in greater patient engagement.
This is particularly critical given that patient recruitment can be difficult, especially in the rare disease space where populations are small, and pharma companies stand to lose between $600,000 and $8 million each day a product is delayed from coming to market. What are some elements that can be built into the clinical trial process for more patients to come?
In a 2022 survey conducted by Rare Patient Voice of 1,989 patients and family caregivers in the United States, respondents were asked a series of questions pertaining to their opinions on what would make the overall clinical research process more appealing to them.
Four areas in particular emerged as being of interest to patients and family caregivers, based on the results:
• Providing compensation for time and reimbursement for travel expenses
• Offering a convenient site location or decentralized trial
• Providing assistance with travel logistics
• Setting up sufficient methods of communication before, during, and after the trial
First, the survey results revealed that there are basic concerns on the part of patients and family caregivers in terms of trial logistics. Mentioned were an overall fear of the unknown, anxiety about potential side effects related to a new treatment, and worry about the benefits of a new treatment in comparison to those of a current treatment. The effects a trial might have on daily life was the number one concern expressed.
Being reimbursed for travel expenses and paid for their time were ranked as extremely appealing by respondents. The preparation and effort associated with participating in a trial can be taxing on a number of levels for families. It’s clear that the time of patients and loved ones is valuable and must be treated as such.
Travel can be exhausting and costly for patients and family members, especially for those dealing with a rare disease, mobility issues, etc. Patients and their families have strong feelings about the location of trials and prefer them to be close to or at home. A site location close to home ranked as highly desirable, with 98% ranking it as moderately - extremely appealing, with a decentralized clinical trial closely following, with 95% of respondents ranking it as moderately - extremely appealing.
Communication and being informed are vital to patients and family caregivers at all stages of the trial. Receiving information on the goals of the trial and gaining an understanding of the treatment under development, being kept abreast of progress throughout the trial, and being provided afterwards with study results are all important to patients and family caregivers.
In fact, 96% said receiving information on the trial’s goals prior to beginning would be appealing, and 96% also said they felt receiving results after trial completion would be appealing. 93% ranked having a single point of contact to turn to for help with travel arrangements and other needs as appealing.
So how can the foundation towards greater patient engagement in clinical research be built?
The RPV survey indicated that this can likely be achieved through keeping the needs of patients and families first and foremost in all planning and execution of trials. Patients and the loved ones who help care for them are not just numbers or trial subjects, they are people with families, jobs, and obligations.
Providing accessible information on the trial and its goals at the outset and addressing any questions and concerns upfront can be meaningful, helping not only with their comfort levels but enabling patients and family caregivers to feel truly included as part of the process.
Taking time to participate in research can mean a major upset in daily routines, so reducing the burden of participation on their lives as much as possible is essential. Providing compensation for time and reimbursement for travel expenses, offering a convenient site location or decentralized trial, assistance with travel logistics, and setting up sufficient methods of communication before, during, and after the trial are all powerful ways to ease that burden.
Building a strong foundation for participation in clinical research should be done towards an ultimate outcome that is desired by all: improving the lives of patients.
