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 with more detailed information available on request.
- 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.
What participants want
- Participants want to be treated:
- with a welcoming, hospitable attitude
- as people with an important role in the research process.
- Participants want researchers to recognise:
- that they have other things going on in their lives
- that convenience makes participation possible.
- Participants want to be asked:
- how they would like to be contacted
- what amount of information they would like
- for their feedback on their experience in the project.
- Participants want to know:
- what information they are likely to get during or at the end of the study
- when they are likely to get this information.
- Participants want information to be:
- easy to understand and share with their support team
- in both written and audio/video formats.
Implementation
- Planning
- How to track participant preferences
- Who is responsible for creating and sending out materials
- Triggers to send participant information throughout the study
- Training staff
- Strategies to increase accessibility of information, e.g. language modality
- Cultural and diversity, issues, especially those relevant to the target population
- Layering information
- All information sent to participants should have a short, plain language summary
- More detailed information to be provided on request
- Having options
- Different communication channels, such as phone calls, emails, and in-person conversations
- Different communication formats, such as written, audio and video
- Co-creating the communication plan
- Consumers with relevant lived experience can check how the materials are likely to be received
- Staff from sites can check how feasible the plan is to execute
- Opportunities to gather and respond to feedback should be incorporated into the plan.
Guidance for ethics review
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 ethical review bodies in approaching and developing policies to enable researchers to embed ongoing communication with their participants into clinical research studies.
[link to Ethics Review Statement]
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.
- International drug trial for a chronic disease
- Overarching communication plan for a multi-study project
- Recovery and rehabilitation study
- Tracking preferences to deliver study updates
- Engaging teens and their guardians
- Conversation guide for survival follow-up calls