Three ways to engage with Patient Advocacy Groups to build trust in clinical trials

Recruiting and retaining participants in clinical trials is an ongoing challenge for drug developers, often exacerbated when actively seeking underrepresented populations for an indication that specifically impacts those groups. While diverse representation in clinical trials has historically been sorely lacking, there is broad recognition today of the need to understand these patients’ unmet needs. Sponsors are striving to accurately assess the efficacy and safety of drugs within the patient populations who will ultimately benefit from the treatment. However, this ambition can run head-on into reality: the lack of trust among people who have borne the impact of this neglect.

What can drug developers do to overcome these barriers? Here are three takeaways from a recent Parexel study that apply to nearly every trial across multiple therapeutic areas.

Applying the “Patient-First” ethos to engage with patient communities 

A core value for us at Parexel is “patients first,” which means that we design and deliver clinical trials with the needs of patients foremost in mind. We insist on working from facts, not assumptions, which requires engaging directly with the patient community and bringing the insights we gain into our organization.

Parexel has prioritized establishing close relationships with patient advocacy groups for many years, working with them as key partners and collaborators. Within the medical community, patient advocacy groups are considered trusted experts in the therapy area and medical condition they represent. And crucially, patients turn to these groups as credible experts for advice, guidance, and feedback.

Conducting webinars to provide education on clinical trials 

A recent Parexel project for lupus illustrates the effectiveness of collaborating with a patient advocacy group – in this case, a Lupus organization serving southern California and the wider lupus community. This was a recognized patient advocacy group in the region, with a large social media presence across the population of lupus patients. We planned to conduct a series of educational activities for members to educate them on why.

Based on recommendations from the organization’s leaders, we opted to conduct these sessions via Facebook Live. This is a well-populated social media channel frequently used by its members, with high traffic and a strong response; the organization had used it routinely for previous activities. The fact that participants considered it a safe environment was instrumental in giving them the confidence to engage with us and ask questions during the webinars.

The success of the Facebook Live sessions far surpassed our expectations. We achieved more than 16,700 views on Facebook and YouTube within the first four weeks. After the live events, Lupus LA surveyed participants to gather their feedback about why these sessions were so important to the patient community. Again, the results were phenomenal, with more than 1,000 responses to the survey questionnaire. More than 68% of respondents reported feeling more comfortable and confident discussing clinical trials with their doctors. More than 65% said they would be more likely to participate in a future trial. 

Building patients’ confidence to advocate for themselves 

In our experience, patient communities have a thirst for knowledge about clinical trials. They have questions about what a clinical trial is, what participation is like, and how to gain more knowledge about trials. By sharing this information, we know that some of the barriers could be removed, mistrust could dissipate, and we could increase patients’ confidence in participating.

As an industry, we should resolve to work closely with these organizations to improve awareness and reduce barriers to participation in clinical trials. Sponsors might choose to consider conducting these types of educational initiatives that are not necessarily trial-specific but aim to drive awareness more broadly.

For future trials, we plan to continue engaging with advocacy groups early in the process, making outreach and education an intrinsic element of our process. It is incumbent upon us to engage with patients compassionately and sensitively when designing and delivering clinical trials. Parexel has longstanding relationships with patient advocacy groups, the expertise, and the commitment to do so – With Heart^TM.

Build a patient-friendly study, from beginning to end

Trial design has long focused solely on the science of the study while neglecting the practicalities of patient access and engagement. From difficulties finding out about study opportunities, to the challenges of visiting inconveniently located facilities for testing, there are many ways studies fail to engage and retain possible participants.

At Parexel, we’ve pioneered several programs that reach and engage previously underrepresented populations, improve the trial experience for all participants, and yield better results for your trials.

Return to Insights Center