Closing the communication gap: A sponsor’s guide to building patient trust and retention
Participation in clinical trials can be burdensome and disruptive. In addition to practical inconveniences and discomfort, participants may have to take time off work, arrange for childcare, and travel long distances to sites. Nevertheless, patient populations can be highly engaged and motivated to participate in clinical research and impact the drug development process. Since participants may not experience direct benefits from participating in a trial, they must be treated with respect, consideration, and appreciation for their efforts. This includes prompt and transparent communication around trial status and results. Surprisingly, a study on global clinical trials revealed that only 10% of the reviewed trials (48 total) included plans to communicate results to participants. In parallel, the UK Health Research Authority reported that 90% of studies never communicate findings to participants.
The message this sends is simple but damaging: participants are valuable until the study is over. In this blog, we explore practical strategies for addressing these barriers to enhance the trial experience and ensure that sponsors encourage participant trust, support long-term trial retention, and keep future participants willing to engage.
The cost of poor communication
When participants don’t hear from sponsors or sites, it can damage trust and may in turn affect retention. The Participant FIRST Work Group, which was established after several Alzheimer’s trials ended abruptly, found that many participants first learned their studies were terminated through the news, not their site teams.
Public companies are legally required to announce material information, like trial closures, to investors before notifying sites or participants. If not handled adequately, this can leave participants feeling like bystanders in a process they helped make possible.
What participants actually want
In a study on participant feedback, 88.5% of participants reported they want to receive trial results. Many also want regular updates throughout the study. Participants tend to prefer personalized communication, while investigators often default to written or online summaries.
Sharing results, even negative ones, demonstrates that participants’ time and risk mattered. It also builds a foundation of trust for future trials, where transparency can become an advantage for a sponsor.
Strategies that build trust and trial retention
Sponsors have the opportunity to shift from fragmented communication to participant-centered engagement. Research (Participant FIRST Work Group and Show RESPECT) and practical experience point to several actionable steps:
1. Plan communication from the start.
Build communication plans into the protocol and budget, covering pre-trial consent, active trial updates, and post-trial follow-up. Include pre-approved templates for early stoppage, ensuring sites can act quickly and consistently.
2. Offer results proactively.
Participants shouldn’t have to search for updates. Send results directly, in accessible language and formats that fit participants’ preferences. The Show RESPECT study found that printed summaries paired with web links led to the highest satisfaction.
3. Collaborate with advocacy partners.
Equip patient organizations with FAQs, plain-language summaries, and clear messaging so they can help manage questions and provide support in the case of negative updates such as trial termination.
4. Keep sites prepared and informed.
When sites are notified late, it undermines participant relationships. Training site staff to communicate consistently, empathetically, and quickly can make all the difference.
5. Close the loop.
Post-trial communication shouldn’t end with a thank-you email. Share what happens next: how the data is being used, what was learned, and how participants’ contributions will shape future work.
The bottom line
Even in the face of several psychological, physical, and financial challenges, participants commit to trials to advance essential research. Poor communication can be an ethical shortcoming and a strategic risk for sponsors. Trials that fail to communicate transparently lose credibility, struggle to recruit, and weaken long-term community relationships. By treating communication as a core part of participant respect, sponsors can build the kind of credibility that sustains recruitment and strengthens relationships across studies.
At Sano Genetics, we believe participants deserve clear communication and meaningful engagement at every stage of a trial. Our platform helps sponsors and sites deliver personalized study updates, results, and genetic counseling through one connected experience to reduce burden and build trust where it matters most.