Participants value respectful, considerate communication that acknowledges their role and commitments outside the study. They seek a streamlined experience where their preferences for contact methods, information frequency, and content type are prioritised. Effective communication plans include:
- Planning: Systematic tracking of participant preferences, assigning responsibilities for material preparation, and setting triggers to share updates.
- Training: Equipping staff to address cultural, linguistic, and accessibility needs of diverse populations.
- Layering Information: Providing clear, concise summaries of information with more detailed information available on request or after the summary.
- Communication Options: Offering a variety of channels (phone, email, in-person) and formats (written, audio, video) tailored to participant needs.
- Co-creation: Involving participants with lived experience and site staff in developing communication materials to ensure clarity, respect, and feasibility.
Guidance for ethics review bodies
Through the research interviews and discussions about the project with the wider sector, it was identified that there was confusion about how to approach seeking ethical approval for non-protocol driven communications. To this end, the project team developed this statement to assist ethics review bodies in approaching and developing policies to enable researchers to embed ongoing communication with their participants into clinical research studies.
Case studies
To demonstrate how projects have embedded communication, the following case studies have been developed from conversations with project team members and through [staff interviews]. The case studies that we present here focus on clinical research projects where attention has been paid to how staff and participants have communicated during and/or after the project. Some of the case studies have been deidentified at the request of the institutions involved.
