HCV CHIM Community Advisory Committee

Six members attended. In alphabetical order: Julia Bacon, Jake Eberts, Carrielynn Lund, Carolina Reid, Thomas Smiley, and Jennifer van Gennip. Circe McDonald from 1Day Sooner also attended to introduce materials from the study team. 

Introduction

Jake and Circe begins with review of the design of the CHIM and where the process is now following resubmission to Health Canada, noting delays resulting from issues raised in this process.

Membership expansion

Members provisionally approved expansion of the board to include CATIE pending further information on CATIE’s role and ability to take part in discussions and vote, and whether a CATIE representative would be acting in their personal or professional capacity, keeping in mind the board’s advocacy-related nature.

Members unanimously agreed that addition of at least one Canadian with lived experience of hepatitis C would be useful. Relevant members plan to reach out to potential contacts to gauge interest. 

Revision of committee guidelines

The board unanimously voted to amend its guidelines to extend the deadline for submission of meeting notes for review from three business days to seven. 

Review of participant-facing materials

Circe led members through various participant-facing materials, including study purpose sheets and business card-sized information documents, among others. Members provided feedback on various aspects of the materials in real time. The board supports the inclusion of the auxiliary materials as a further aid to participants and believes they can be valuable for participants given the complexity of the study. In general, the board felt that providing additional forms of communication and information, such as through the documents presented at the meeting, is a good way to help ensure participant understanding.

The board also provided feedback on proposed logos for the study; one was strongly preferred, and this was communicated to the study team. 

Cell phone question

Circe introduced a study design feature related to the use of a second, study-provided cell phone by participants during the study. They explained that this would be the default option, though others, including downloading a related app on one’s personal device or using paper- or SMS-based methods, would be available to track relevant study information. The board noted two potential major issues with making secondary cell phones the default option:

• All else being equal, use of one’s own device will likely make adherence to study procedures easier. A second cell phone could be easily lost or forgotten. 
• Requiring users to keep a second cell phone could raise questions from others, so we do not believe that it would be net privacy-protective over using an app on one’s own device or other methods available to the study. 

For this reason, the board unanimously recommended against making a second cell phone the default option offered to participants, though leaving it available for participants so inclined would be acceptable.

Other requests

The board requests informal updates be periodically sent to members informing them of relevant developments so that members can keep up to date and can spend less time refamiliarizing themselves with the study’s status in the lead up to meetings. Members also requested that at the next meeting in more detail (date to be determined), the study’s principal investigator, Dr. Jordan Feld, introduce himself to members not acquainted with him and describe some aspects of the study in more detail.

The board also requested the most recent version of the informed consent document be shared so members may review before the next meeting.