Returning research results to participants

The PROGRESS study is evaluating the use of pharmacogenomics in routine primary care. The study recruited and genotyped 1,000 participants across four key pharmacogenomic genes, with results linked to prescribing guidance for 16 commonly used medicines.

Participant feedback showed strong demand for access to individual results, with over 95% of surveyed participants reporting that they wanted to view their results themselves.

The challenge was to create a simple, secure and understandable way for participants to access their results, while fitting within the study’s existing ethical, governance and operational framework.

We built a web-based results platform that allowed participants to opt in, give explicit consent and access a clear digital view of their pharmacogenomic results.

The pathway was designed to minimise burden on the research team. Participants received study communications with an invitation to access their results digitally. Those who opted in could complete a short sign-up process, after which the study team securely transferred the minimum required data to Fava for processing and results return.

We translated pharmacogenomic data into participant-friendly content, designed to help people understand how their genes may influence their response to common medicines, including statins, proton pump inhibitors and antidepressants.

We also used the project to build the operational foundations needed for future NHS-facing deployments, including secure data transfer processes, clinical safety checks, user support workflows, and the information governance work required to support NHS DSPT and Cyber Essentials readiness.

The project gave participants a practical way to access and understand their own pharmacogenomic results.

It also gave us a real implementation use case for testing the Fava platform in an NHS research setting, including bulk onboarding, secure data handling, participant communications, results processing and patient-facing content design.

For the PROGRESS study, the platform created a no-cost route to meet participant expectations and strengthen the return-of-results process. For Fava, it provided valuable learning on how to deliver digital genomic results safely, clearly and at scale.

Research participants increasingly expect access to their own health data, especially when that data could inform future care.

This project shows how we can support research teams and healthcare partners to return genomic results in a way that is secure, understandable and useful for participants, while building the infrastructure needed to make genomics part of everyday care.