According to a 2013 CISCRP survey, 95% of clinical trial volunteers say they would consider participating in another study. The study reports that most people choose to complete a clinical trial for the following reasons:
• compensation
• to keep a commitment
• to gain knowledge of their disease
• positive response to treatment
• free procedures, study medication and study related medical care
• the relationship they built with the study staff
But what happens when the study is over? Where does the study volunteer go?
Many Investigators also operate a private practice, making it easy to continue a study volunteer’s treatment. For those investigators who do not have a private practice, it is important think about after-care. Many investigators are well-connected in the local medical community and are happy to reach out to other doctors and even set up a first appointment.
Patient Assistance Programs:
Clearly, many volunteers are attracted to clinical trials because participation is usually free and insurance is not required. Some studies will include a long-term, open-label extension, which means that the volunteer can continue to receive the study drug and maintain regular visits with the study staff for extended periods of time. But if this is not offered, Patient Assistance Programs (PAP’s) may be an option.
PAP’s are provided by most drug companies to help patients cover the cost of medicines. These programs are available for most brand name and generic medications. Each program has different eligibility criteria, but typically the applicant must not have private or public insurance coverage and have an annual income below a specified amount. People who qualify may be eligible to receive their medications at little to no cost. Investigators can usually help with the application process. Needymeds.org is a good place to start.
Plugging into the community:
Another tool is getting a clinical trial volunteer plugged into the community. There are national organizations such as The National Alliance on Mental Illness, The Alzheimers Association and The American Cancer Society, whose local chapters throughout the US provide in-person support groups and other valuable resources. Also, there are now social networks such as Patients Like Me, Inspire and other disease-specific communities where patients can share resources and support each other online.
Maintain Communication:
More is being revealed about study volunteers and their desire to be kept in the loop about a studies progress. Like any relationship, communication is key. Keeping volunteers updated on study results can let the volunteer know that they are part of something bigger and not just a “subject”. This type of communication could be in the form of a phone call, email or newsletter. If investigators could designate one staff person to update volunteers, it would really show the sites appreciation and keep the volunteer engaged.
Have you had any experience with these resources? Or, Do you know of any other resources that could ease the transition from clinical trial to traditional care? Tell us about it below!