ANZUP Mini ASM 2021: An Update On The ANZUP Consumer Advisory Panel (CAP)

(UroToday.com) On the second day of the 2021 ANZUP Annual Scientific Meeting, one of the key sessions focused on what is happening for ANZUP trials. Ray Allen presented an update on the Consumer Advisory Panel (CAP) group. This group is composed of individuals with personal or indirect personal experiences with cancer who contribute expertise with a diverse disease-related experience.

CAP team members provide important guidance regarding what they deem suitable regarding the explanation of procedures within the context in a trial, the language utilized in communications with prospective participants, and the choice of terminology (eg. negative terms such as “failure”). Mr. Allen further emphasized the critical importance of ensuring that what is deemed informed consent is truly informed and that potential trial participants understand the context for the study and potential alternatives.

The group provides significant behind-the-scenes work, synthesizing the perspective of each member to form an overall “CAP view” for each proposal. The group has reviewed, each year, a number of study protocols with increased engagement over the past year. He emphasized that, as of recently, investigators developing and submitting proposals are coming to the CAP group pre-emptively to explain the study rationale and approach and highlighted the value of this direct engagement between investigators and the group.

He further highlighted that many members of the CAP group contribute to committees and subcommittees informing trial design and conduct for specific topics and trials relevant to their disease areas. Further, he emphasized that this group is generating novel research questions.

As a result of this group, the use of lay summaries has become routine. In addition to the value of these as stand-alone summaries, he emphasized that these have grown in parallel with the increasing readability of the entirety of study protocols.