Every year, millions of people all over the world volunteer to be clinical trial participants. In fact, the Center for Information & Study on Clinical Research Participation (CISCRP) estimates 2.2 million people participated in a clinical trial in 2013. Their reasons for doing so vary wildly, from feeling that a clinical trial is the best hope for survival of a terminal illness, like cancer, to wanting to help save lives for future generations of patients, to having a desire to be involved in a process to advance science.
For most people, clinical trial participation is a positive experience. According to CISCRP, an overwhelming 95 percent of clinical trial participants say they would consider participating in another trial.
For many people, however, the world of clinical trials is confusing and more than a little scary. Misinformation about clinical research abound, with advertisements such as 2012 advertisement for Toshiba poking fun at clinical research participants not doing the research community any favors.
The idea that clinical trial volunteers are guinea pigs or lab rats is a long-held falsehood, and as clinical trial education improves, so too does the likelihood that patients will participate in a clinical research trial for which they qualify.
Largely, patients consider their doctors, followed closely by family members and close friends to be their most trusted source of information about health. Clinical trial participation is no different. For many clinical research sites, their own patient database is the best communication tool they have.
With that said, communicating about a clinical trial opportunity is really not that different from other forms of communication. In its Communications Handbook for Clinical Trials, FHI 360, a nonprofit human development organization, notes that effective communication about clinical trials serves to:
- Explain the scientific value of the trial to policymakers, funders, participants, and other key stakeholders
- Inform while preventing misinformation and over reaction
- Maintain support for the current study and for future research
- Mobilize political will for developing guidelines and national policies and for funding implementation of scientifically proven health interventions
- Provide sound sources of information for news media
For potential patients, this communication should go a bit further.
- Explain why you are doing the study. Brainstorm possible questions patients may have and then determine how you will answer those questions. The answers to these questions will be included in an Informed Consent Form but should also be found in other communication and materials you prepare for patients and the community. Potential questions may include:
o What is the goal of the study?
o What are the potential benefits to participating?
o What are the risks?
o How many people will participate?
o How long is participation?
- Document the most important points you want to convey. FHI 360 provides these tips:
o Write short sentences that summarize your main points.
o Use simple, jargon-free language.
o Use active rather than passive voice.
- Provide supporting messages for each key message that you create. Supporting messages should include facts and data (written in a patient-friendly manner) that can help a patient make an informed decision about clinical trial participation.
Clinical research is complex, and the process can be overwhelming to patients, but effective communication that speaks appropriately to the target audience can help advance both your message and your research.