When Biohaven began our OCD study last year, we expected there to be challenges in finding patients. But as our study team has many years of clinical research study experience, and a baseline knowledge of the OCD condition, we felt we had a pretty clear idea of what those challenges would be and how to address them. There are many recruitment support vendors out there, who specialize in reaching large numbers of people, and we used several of these vendors early on. But when this didn’t produce the results we expected, it was clear that traditional methods were not going to work, and that we would need a different approach.
Right about that time, we were fortunate to become acquainted with a small start-up company called nOCD, and its founder Stephen Smith, who himself suffers from OCD. nOCD had developed a web platform and online community specifically tailored to engage OCD patients. After only a few conversations with Stephen and his team, it was absolutely clear to us what had been missing in our efforts to reach OCD patients.
What we had been missing was the voice of the patient. And it was only until we heard directly from people who are living with OCD, in their own words, exactly what their fears and concerns are about participating in a clinical trial, did we really understand what we would need to do to truly engage them. Everything from how they wish to be contacted (phone, e-mail, text message) to managing the fact that they may not return a call, due to anxiety, but may actually want to participate, if only someone would be persistent and call them back.
This information was critical to our own understanding, and it also provided specific actions we could take in educating sites about how they interact with OCD patients. As much as we would like to believe that all sites approach recruitment with a deep understanding and empathy for the specific types of patients they are reaching out to, this is not always the case, and our ability to educate them was going to be just as important to the success of our study.
The study has been challenging, as we knew it would be, but it’s also been a journey in our understanding of OCD. We’ve learned that there is a huge difference between knowing what OCD is based on clinical descriptions, classifications, sub-types, etc. and hearing directly from OCD patients, in their own words. It’s a completely different level of understanding and speaks so clearly to how we all need to approach our work if we ever want to make a real difference in the lives of those who are truly suffering.