Primary Point of Contact

A clear and consistent point of contact is essential to supporting participants throughout a study. Having a designated contact person or team member who communicates with participants using their preferred channels—whether it be phone calls, texts, or face-to-face meetings—can significantly enhance their experience and trust in the study process. This contact should be knowledgeable, compassionate, and well-equipped to answer questions, ensuring participants feel informed and supported. Providing clear contact options, empowering staff with guidance on appropriate communication, and offering accessible contact information can make the process smoother for participants, particularly those with specific needs or disabilities.

  • Participants wanted consistency in who they spoke to, and for that point of contact to be able to find answers to any questions.
  • They wanted the person to be confident in what they could and couldn’t tell them about the project or know who to contact to find out answers.
  • Quotes:
    • I don't need a friendly person: I need this process to be very smooth and clear.
    • One method of communication, clearly labelled or spoken about at the beginning and that's it.
    • Do you have people with disabilities in your cohort? Then you have to work out what kinds of disabilities and cater to them, instead of just a general standard.
    • Over the two years I had a lot of rotating registrar doctors, so they didn’t know a lot about the study. The trial nurse probably should have, but seemed reluctant to provide information. I had to re-educate the doctors each time they started. It would have been nice to have someone who was prepared to share information with me.
    • I prefer to communicate either face-to-face or via phone. I hate texts because they can be misinterpreted. I always prefer to talk to people. [stroke survivor]

  • Provide clear channels for participants to contact the research team, including a dedicated phone number for calls or texts. If participants are able to program a study number into their phone they are more likely to be able to find it quickly if needed, and to trust messages sent from that number.
  • Ask participants for their preferred communication channel and use that channel. For instance, that could mean using text messages to set up a convenient time for a phone call if that is required by the protocol.
  • Staff should be trained to communicate with humanity, respect and compassion. This may require communication strategies specific to the target population if there are specific communication issues related to the participants’ health status, primary language, or culture.
  • Provide guidance to site staff about what can and can’t be discussed with participants, so that they are empowered to discuss as much as possible.