Why supporting and appreciating representative trial participation matters

At ICON ensuring scientifically representative participation is not a stand-alone initiative, it’s embedded into every trial we support, shaping smarter, faster, higher-quality research. We start with the patient’s voice.

By understanding trial participation from the patient’s perspective, we help sponsors attract and retain participants from diverse communities. From site selection and protocol design to trial communications and follow-up, every aspect of a clinical trial benefits when informed by patient perspectives.

Sponsors who build patient insights into early planning gain a competitive edge to deliver trials that are both inclusive and efficient.

Many sponsors default to familiar sites and high-profile key opinion leaders (KOLs). Instead, ICON helps them follow the data to regions with the disease’s highest incidence and the most relevant patient populations.

That may mean engaging new sites or working in new countries, but the reward is stronger science and increased access to the patients most affected by the disease. Patients living in remote rural areas are often excluded from clinical trials due to their distance from academic medical centres. Meanwhile major academic sites may face heavy competition from overlapping studies.

ICON often recommends including principal investigators (PIs) with deep community reach to support driving recruitment more effectively by connecting with underserved populations.

Educating site staff on why representative enrolment goals are in place, and how they align with the science is essential. Cultural competency training is advised to help ensure participants feel respected and supported during the trial.

Having multilingual site staff makes it easier for participants to communicate in their preferred language, ensuring important nuances are clearly understood and critical details are not lost in translation. Finally, it’s important to ensure that translated study materials are culturally relevant and easy for participants to understand.

Many trial participants must balance their time in a clinical trial with careers and caring for children or other family members. At a minimum, trial participants should be compensated for their time and travel. ICON also supports decentralised trial options that make trial participation more convenient, such as home health visits, remote monitoring and the use of digital health technology.

When trials require invasive procedures or extended recovery times, sponsors should also consider covering the earnings lost.

There is a high degree of altruism involved in trial participation. Patients want to contribute to developing new treatments to improve their own health and help others.

Sponsors should honour this contribution meaningfully. By advocating for open-label extensions they could allow patients to continue to receive treatment and feel valued.

Some sponsors offer trial participants lifetime access to the therapy, a powerful acknowledgement of participants’ valuable role in drug development. Small gestures, like sending participants routine updates are simple but impactful ways to reinforce appreciation and foster lasting trust.

At ICON we believe that representative trials are more than just good science. They are essential for faster, fairer access to life-changing therapies.

By embedding the patient perspective at every step, we help sponsors design smarter studies that reflect the real world and deliver better outcomes for all.