When clinical research professionals talk about recruitment and retention, their timeline typically does not extend beyond the duration of a particular study. Little thought is given to “retaining” patients after the final visit. But we should also have strategies to maintain relationships with patients once study participation has ended.
The Need for Post-Trial Communication
Over 70% of patients who have participated in clinical trials are likely to do so again, which is an impressive statistic considering the time commitment often involved. Clearly, most research participants view their experience quite positively.
Because of this positive attitude, many research professionals maintain a database of former research participants, which facilitates communication about upcoming studies. However, it’s not uncommon for communication with former participants to lapse between studies.
The Center for Information & Study on Clinical Research Participation (CISCRP) conducted focus groups with clinical research volunteers. Though most of the feedback was positive, participants noted one area of their clinical trials experience that could use improvement.
Study volunteers unanimously agree that being in a clinical trial is an “unusual experience” that places them among a unique segment of the population. Most study volunteers, however, perceive that their role in a clinical trial ends with their final site visit. Most conversation group participants express feeling that their trials ended abruptly, usually with unfulfilled promises of information on either concluded or upcoming studies. Without post-trial follow-up, volunteers are left feeling unsure of the details and value of their study and of their personal gift of participation.
Given participants’ overwhelmingly positive attitudes about their experience, it’s unfortunate that patient participation is often ended on this note. Study volunteers are a vital part of drug research and we, as a research community, need to do a better job of showing our appreciation. Clinical trial volunteers are a unique segment of the population, and they want to feel connected to the research community even after study participation.
While sponsors and CROs could do a better job in this area, they are somewhat limited by patient privacy protections. Research sites, on the other hand, have both the ability and the rapport to maintain relationships with former study participants. The challenge is finding the time. Certainly, periodic phone calls with former study participants would be ideal, but that’s a time-consuming proposition.
An Excellent Alternative
Though not as personal, email newsletters are an excellent alternative to phone calls. Most everyone has an email these days, and email newsletter software is affordable for sites. This software is increasingly sophisticated, allowing users to personalize emails, integrate email campaigns with social networks, and segment emails by therapeutic indication and other variables.
In terms of content, research sites have a variety of options. Sites can communicate study results with patients who participated in a study and share other useful information related to patient health issues. This information might include disease management guidelines, related news items, or recently published research.
Sites can also use email newsletters to communicate about general topics. These topics might include updates about the research site or its employees. In addition, sites can send greetings and well wishes for major holidays.
The Email Recruitment Possibilities
Email newsletters are also very useful for recruitment. Former study participants are great representatives for the research community, and the ease of email allows them to easily forward information of value to people in their network.
Traditionally, sites only contact patients about upcoming studies directly relevant to them. With email newsletters, that need not be the case any longer. Patients who valued their experience as participants are often happy to forward study information to friends and family who might be a good match. It doesn’t hurt to ask. But remember that emails about studies will need to be IRB-approved.
Don’t limit your email newsletters to former research volunteers. Include current participants and anyone who is curious about clinical trials. For people with little knowledge about clinical research, email newsletters can be an excellent tool for education.
Email newsletters are just one way that clinical research professionals can improve communication with former study participants. How does your site keep communication open with former volunteers?