High Level Guidance

The literature search, research interviews, and participant workshops, all emphasised that participants value respectful, considerate communication that acknowledges their role and commitments outside the research project. They seek a streamlined experience where their preferences for contact methods, information frequency, and content type are prioritised.

For research communications to effectively meet the needs of participants, the following strategies have been identified as important:

  • Planning: Developing a communication plan that includes systematic tracking of participant preferences, assigning responsibilities for material preparation, and setting triggers to share updates. The plan should consider how, when and how often participants want to receive updates about the project.
  • Training: Equipping staff to respond to the 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

Ethics review bodies including Human Research Ethics Committees (HRECs) play a key role in reviewing information that goes to a participant to ensure it is consistent with the National Statement. Through the research interviews and discussions about the project with the wider sector, confusion was identified about how to approach seeking ethics approval for various kinds of communications. To this end, the project team developed a 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.

Guidance for Ethics Committees

We encourage researchers to proactively discuss with their ethics review body their planned communication strategy/activities and what the ethics review body may need to review to support those activities.

Beyond the Form case Studies

In the absence of literature on how research teams are communicating with participants, it is not always obvious what is possible and how to do it.

Through conversations with the project and research teams, the following case studies have been developed to provide examples of projects where attention has been paid to how staff and participants have communicated during and/or after the project. Some of the Beyond the Form case studies have been deidentified at the request of the institutions involved.