This article was originally published on September 12, 2016 as a part of the Partnerships in Clinical Trials Blog.
Patient recruitment has been a constant pain point for the clinical research industry. It’s often challenging to find individuals to actively participate on a study and low accrual rates often halt the progress of potentially game-changing treatments. Many articles suggest methods for spreading the word about clinical research to those unfamiliar with the industry and increasing public awareness for clinical research. However, these articles often fail to mention one key population: repeat study participants.
While not applicable for every study, repeat participants are often the most valuable part of a researcher’s participant database. These individuals can be considered experts of clinical trial participation, as they understand the value of clinical research, they are familiar with what is required of them during the course of a study, and are thus more inclined to finish the entire clinical trial. Efforts to actively engage clinical trial participants could increase the number of repeat study participants and potentially generate more awareness for clinical research.
Changing the engagement framework
Historically, participant engagement typically involved clinical researchers communicating with participants in a single-use way. This means a participant is engaged solely for the purpose of completing the entire study, and communication ends once the study is over. This framework often fails to generate repeat participants, as the engagement stops abruptly. The participant may feel forgotten and disgruntled, or left unaware of other potential trials.
One solution is to build a framework for participant engagement that incorporates multiple instances of communication. These instances should include a timeline that expands beyond just the beginning and closing of a clinical trial, reaching the participant at multiple stages of consideration and reflection. An example of these multiple stages could include:
Stage 1: Awareness and Consideration
At this point, a potential participant may not fully understand clinical research or how they can participate. Reach out to advocacy groups or appropriate social forums to start discussions about the benefits of clinical research. Note, this does not mean advertising specific clinical trials, but starting a conversation about the value of participating in clinical research in general.
On the other hand, a person at this stage may understand clinical research and may have considered participating in a clinical trial, but may not know what trials they qualify for or where they can find more information. At this point, it’s appropriate to direct potential participants to specific clinical trials through compliant advertising materials or by asking physicians to refer trials to applicable patients.
Stage 2: Throughout the Trial
Through the course of a clinical trial, it’s important to actively engage patients in a way that is transparent and consistent. Participants allot a good amount of time and effort to participate in a clinical trial. As a result, they often wish to be updated on study procedures and feel as though they have an open line of communication with clinical researchers. This communication should go beyond scheduling calls and in-person visits. Ways to increase participant engagement during a trial could include:
- Creating a participant newsletter that includes clinical research facts, updates about sponsor events, etc.
- Sending cards to participants to celebrate birthdays, anniversaries and holidays.
- Calling or emailing participants in-between visits to check in and discuss any struggles they may have with study compliance.
Stage 3: Following Study Closeout
Participants often wish to learn the results of a study following participation. When appropriate, sending study results after a trial ends can significantly increase participant satisfaction. Thank you cards or some form of appreciation following study closeout (in line with industry regulations, of course) is another simple, courteous gesture that can make a significant impact on participants’ impressions of their clinical trial experience.
It’s also important to continue the ‘Stage 1’ conversation with patient advocacy groups and social forums to continuously generate enthusiasm for clinical research in other potential participants. Ultimately, participants should be engaged on a broader scale, encouraging a positive outlook on clinical research rather than just one particular trial.
Creating advocates for clinical research
Not only does increased engagement mean the participant is more likely to join another clinical trial, but that individual may also be more likely to spread the word about his or her positive experience to others. This both increases awareness about clinical research, positively impacting public opinion, and also increases the likelihood of others participating in a clinical trial.
The most powerful driver of sales for any product or service is a referral from a friend, family member, colleague, etc. An individual is more likely to purchase an item that has received positive reviews from someone he knows than if his first interaction with a product is a pitch from a salesperson. This concept is also true for participation in a clinical trial. Referrals from previous clinical trial participants are a valuable patient recruitment tool. Actively engaging participants before, during and after a clinical trial can significantly improve the trial experience for participants and make them more likely to refer a clinical trial to others.