A big barrier between the public and clinical research has always been a lack of awareness. The coronavirus outbreak has catapulted the importance of clinical trials into the public domain. With this in mind, the clinical research space could be at a turning point in regard to its relationship with the public at large. Now is the right time to start building that much needed trust. But to approach this in the right way, it has to be meaningful. It has to be genuine, helpful, and led entirely by patients’ wants and needs. In terms of improving communication, it’s all about quality, not quantity…
Understanding patients’ distrust in clinical trials
Before you begin to put a strategy in place to build trust with patients, you need to understand the causes of that distrust in the first place. Everyone will have their own concerns about the clinical trial experience. Some could simply be due to lack of awareness and knowledge, some could be due to previous experiences, and often, minority populations have little confidence in clinical trials demonstrating cultural competency.
One meaningful way to build trust with minority populations could be ensuring that clinical trial investigators come from diverse backgrounds. This will do much more than just pay lip service to the idea of working to understand cultural differences and requirements. It will put real people in the right place to ensure those needs are addressed, and done so in an authentic way.
Transparent patient engagement
Just as improving communication is essential to building trust, true transparency is essential to the effectiveness of that communication. This can begin with openly sharing details on everything from your innovations to your processes. Sharing information like what was required to develop a drug, how were your challenges overcome, and what was your honest experience. While this kind of information isn’t essential to the public, it helps tell your story, which is powerful for building credibility and trust. When it comes to communicating the real need-to-knows with patients, not disclosing the full story will soon become apparent and detrimental to your relationship. When providing details on what the trial experience will be like, what patients should expect, or the potential for successful treatment, honesty is vital. This can even stretch to allowing patients in trials to view and download certain clinical trial data to share with others, such as their primary care physician. Patients own their data, so in the spirit of true transparency, it shouldn’t be hidden from them. Across everything, patients’ questions should be answered honestly, clearly, and preferably in the patient’s first language. Imagine if all the marketing content we created existed to simply answer to patients. Surely then we’ve done our job right?
Listening to patients and communities at the right moment
Something that we’re finding really insightful here at COUCH Health is social listening. Social media is already recognised as a place to target patients with communications, but actually the most powerful thing you can use social media for is to listen to the discussions patients are having organically, unaware of your observation. Here, you can gather honest data to determine how patients feel about your trial or company. Plus, listening to patients’ genuine wants and needs means you can create communications that are the most meaningful, rather than based on your assumptions of what they want.
Opportunities to build trust are endless
In this article, we’ve only scratched the surface of what can be done to build trust. Other opportunities include creating messaging from company staff to give your communications greater credibility to the processes. Going one step further and opening up your laboratories to potential patients will showcase the work that’s being done and give people a better idea of why drugs can be so expensive. Lastly, providing support to patients beyond the clinical trial can do so much to build trust and provide reassurance. This can simply be helping to educate patients about their diseases, and offering the tools and support structures to help manage them.
As awareness around clinical trials has heightened, there’s an opportunity to overcome a barrier that’s forever stood in the way of enrolment. The challenge will be ensuring that the newfound awareness isn’t also a catalyst for heightened distrust among certain populations.