This February, six of the eight patient advisers from the CONNECT-HF trial traveled to Durham, North Carolina to meet with the trial team at Duke Clinical Research Institute and provide input to help improve the trial experience for participants. The advisers, who have called themselves the Cardi-Yacks, traveled from across the United States to meet each other and the trial team in person for the first time, after many months of working together through phone calls and emails.
The Cardi-Yacks and trial team got to know each other over dinner, then spent the next day together for a series of working sessions. Through a mix of one-on-one interviews, focus group discussion, and written comments, the Cardi-Yacks gave feedback on everything from the informed consent process, to the materials that will be given to participants during the trial, to the overall design and interventions of the trial. The feedback that the Cardi-Yacks provided has been invaluable in helping the trial team develop materials that will provide the right information, in the clearest format, to participants who take part in CONNECT-HF.
In addition to providing their feedback, the Cardi-Yacks sat down for video interviews to talk about their unique experience as people with heart failure, as well as their involvement with the CONNECT-HF trial. View highlights from the Cardi-Yack videos here. Before their trip home, the Cardi-Yacks all got together for a fun afternoon touring Durham and Duke University by bus.
The meeting was a great opportunity for the CONNECT-HF trial team to gain perspective from a patient’s point of view and make improvements to the trial before patient enrollment. The CONNECT-HF trial team looks forward to continuing the partnership with the Cardi-Yacks as the trial progresses.