Beyond the Form

Engaging with Participants Throughout Clinical Research

Timeline: Q4, 2022 – Q3, 2024 

Issue: Guidance on and evaluation of long-term dialogue between researchers and current participants and consumers remains limited. Although it is acknowledged that care-related discussions routinely occur, there remains a need to think more broadly about when and how to engage with research participants over time.

Further challenges to ongoing communication can arise through novel clinical research designs, which may challenge traditional notions of one-time, opt-in consent.

Purpose: CT:IQ in partnership with the VCCC Alliance has established a project to assess whether ongoing communication strategies with current participants in clinical research will increase participant satisfaction, retention, and the likelihood of future research participation.

Objectives:  The project will:

  1. Identify ongoing communication strategies that can be employed in clinical research.
  2. Highlight participant, consumer, and researcher perspectives on, and/or experiences of, these strategies.
  3. Evaluate the costs – financial and otherwise – associated with implementing these strategies in clinical research.
  4. Examine the variations in clinical research design that may impact the implementation, and/or success of, these strategies.

Project Team

A Project Team comprising 20 people from CT:IQ member organisations has been established to undertake this exciting project. View the Project Team

Participant Workshops

The project team is now recruiting for two 2-hour workshops, online or in person, to understand the unique and valuable insights of those who have partcipated in clinical research, or have supported someone who has participated. READ MORE

White Paper

CT:IQ had engaged two researchers to develop a white paper on the use of ongoing communication strategies with current medical research participants and consumers.

The White Paper on two-way communication strategies, prepared by Matilda Hass and Rosie Brown from Australian Genomics has now been released. This project was a rapid review of both published and grey literature that assessed strategies used to facilitate communication between research teams and research participants. 

Read the White Paper

Poster Presentation

The team presented a poster at the ACTA International Clinical Trials Symposium, showcasing an overview of Beyond the Form.

View the poster