In this conversation, Jeff McIntyre leads with his impressions on the pan-society presentation of NAFLD nomenclature consensus process. He begins with an objective account of the parameters around an extensive Delphi process. Notably, Jeff points out that the discussion appears to be shifting away from the phrase “metabolic.” This is important because in many cultures and settings, “metabolic” may be no easier to explain to patients than “non-alcoholic,” although the specific challenges differ. Jeff also highlights that discussion appears to be moving away from redefining the target patient population. Any change in patient definition threatens to set back the ongoing clinical development work on drugs and diagnostics by a matter of years. Such a setback is clearly not in the interest of patients.
Jeff then engages in a critique of process elements that he felt were not supportive of patients. While every statement needed to surpass a two-thirds “supermajority” threshold to be incorporated in the consensus document, the group comprised more than 70% clinical researchers. If clinical researchers supported a statement heavily enough, no other group input would matter. He also notes the general sense of intimidation felt by patient advocates in the audience of the public debate. While the debate included 5-minute statements from GLI CEO, Donna Cryer, and PBC Foundation CEO, Robert Mitchell-Thain, advocates in the audience didn’t feel welcome to make any statements.
At this point in the conversation, panelists Stephen Harrison, Sven Francque, Jörn Schattenberg, Ian Rowe and Roger Green join to offer their perspectives:
Stephen describes Jeff’s passion as a breath of fresh air. Sven, who was quite involved in the process, responds with his experience and outlook. Jörn acknowledges this to be a complex challenge for the field and that there is no model to measure the potential consequences. Ian voices concern for “a real risk” in having alternate definitions without genuine consensus. Roger responds from his unique position of being neither a patient nor a physician.
Overall, the reactions are unique, interesting and varying. Surf on to hear their full takes.