Literature review
The team started by commissioning a rapid literature review of published evaluations of two-way communication in clinical research and relevant Australian policy and guidance documents. This review found that the effectiveness/impact of embedding effective communication is often not evaluated, with only 17 papers identified that met the criteria. [link to white paper] The findings of the review confirmed an unmet need and were used as a starting point for interviews with research staff, developing materials for the participant workshops, and developing the scope for the pilot project.
Gathering Australian perspectives
The team then interviewed 20 people working in Australian clinical research projects. The purpose of these interviews was to understand current strategies used in both observational and interventional clinical research projects. In the interviews we asked about the benefits and challenges faced when embedding these strategies into their past projects, and how they would ideally embed communication into future projects. [link to ACTA poster and/or staff interviews paper when published]
The findings from this work were also used to inform workshops with Australian clinical research participants about their experiences communicating with their clinical research team. Three workshops were conducted with 22 past participants, both online and in-person. They were asked about their specific experiences and what they would ideally like in future projects. This was framed both as general principles and related to specific communication strategies identified in the white paper or the staff interviews. [link to existing workshop recruitment page]
Pilot project
Through the literature review, we were aware that there had been little work done on evaluating strategies to facilitate communication between clinical research teams and their participants. We were also aware that site staff work within the parameters of the protocol, their staff availability, site budgets and their site protocols (such as ethical and governance reviews). To investigate this further, VCCC partnered with WEHI to develop a pilot project. The pilot project is a sub-study of an investigator-initiated project (FORECAST-2) testing a new way of determining which cancer treatment is most likely to be effective for each participant. [see more detail in the case study]. As well as asking participants about their communication preferences, the sub-
study will track the resources required to deliver those preferences at both the site level and centrally, and measure the perceived benefit of these communications.
[link to WEHI “Tracking preferences to deliver study updates” case study]
