During last week’s #ILC2022 meeting in London, Louise Campbell took the opportunity to sit down with PBC Foundation CEO and Fatty Liver patient Robert Mitchell-Thain to discuss patient engagement from their own perspectives, Louise as a longtime hepatology nurse (and NAFLD nurse) and Robert as a patient advocate and NAFLD patient.

NAFLD Nurses and Touchy Topics

In this conversation, Louise and Robert start by discussing items that have “rocked their world” from this meeting. Robert starts by commenting on presentations that suggest how many patients get missed with a FIB-4 or ALT and expresses the hope that we will improve screening processes to find more people quickly. From there, the conversation shifts toward the role of stigma in patient communication. Specifically, Robert notes about “internal” stigma, the discomfort that patients have discussing their own issues of weight and appearance or sexual dysfunction. Specifically, he states that patients need to “lead from the front” by bringing the statements out in the open, which will make it more obvious that physicians and nurses need to raise these issues during initial visits. It will also push these issues into clinical trials, where we can learn about frequency. Robert notes that nurses have unique value: physicians care about metrics and medical numbers, patients care about quality-of-life, and nurses has the knowledge and skills to bridge between the two. In closing, both agree that patients need to be bold and up-front about their issues instead of, as Louise notes, surrending all accountability once a person allows herself to be define as a patient.