Surfing the MASH Tsunami

S3-E50.3 - Patient Input for Clinical Care Pathways and Guidelines


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Patient empowerment can be an overlooked, yet critical success factor for putting a dent in Fatty Liver disease. This conversation details the involvement of three patient advocates in developing clinical care pathways and guidelines.

Louise Campbell opens with a suggestion that companies focus mostly on purchasers of medication. This rarely includes patients, who are more often considered end users in advanced economies. Emphasizing the resourcefulness of patient advocates, she expresses gratification that our panelists feel better listened to in the development processes today than in the past. She shares her perspective that liver disease needs to be part of every conversation across metabolic health. Louise notes approvingly of a recently attended primary care meeting where liver played a significant role. Michael Betel adds that AASLD now hosts significant patient contributions - a new and major improvement. 

Roger shifts to focus on how closely the advocates are involved in developing clinical care pathways and guidelines. He refers to recurring conversations on the podcast with physician advocates. Those considering the totality of disease are looking for ways to simplify and structure pathways and guidelines to best benefit the whole system. Robert Mitchell-Thain builds on the idea that it is important to create and adopt patient-friendly guidelines. He suggests that it is equally important to develop tools which allow patients to understand and utilize these guidelines. Michael mentions his contributions to the Canadian guidelines being developed. Wayne Eskridge expresses concern that too much focus of the guidelines is on drugs and not enough on self-care from earlier in the disease cascade. 


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