Surfing the MASH Tsunami

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Co-chairs Shira Zelber-Sagi and Mike Betel and panelists Tom Marjot and José Willemse, all from the EASL Congress session "Patient Experiences in Clinical Settings," join Louise Campbell to provide an overview of issues in physician-patient communication. 

The conversation itself has two elements. It starts with first-time surfers Tom Marjot and José Willemse introducing themselves to listeners. After that,  Shira starts by discussing the EASL Congress session within the context of a broader collaboration called "EASL Patient Synergies." This program led to the creation of the Patient and Advocate Forum as the EASL Congress, which led to this program. She says this year's program "worked" in developing "very interesting and fruitful and open dialog between patient and patient representatives and physicians," focusing on unmet patient needs and the roles various providers can play in addressing these. Mike shares one of his key takeaways: how fearful patients are when approaching physicians and how little information they share. 
 
 Mike recalls a comment Tom made during the session that if a patient ever told him, "What you just said hurt me or made me feel bad," that would have more impact on him than, as Tom puts it, "an entire weekend at a stigma workshop." Tom describes three levels at which to address patient stigma. Two of these, public policy and patient advocacy, are well known, but the third, improving direct physician-patient interaction, may be more vital and is underappreciated today. If patients provided direct feedback to Tom when Tom was communicating poorly, he says, he could adjust with the very next patient. Today, though, he doesn't get that kind of feedback. 
 
 Jose sees this as a two-way problem. Yes, most patients are fearful and do not share what they are thinking with the provider, but the reverse is true as well. When a patient shares feelings with a provider, the provider may not be equipped to handle it. She makes this point about provider insensitivity or failure to listen with two powerful vignettes.
 
 Tom recalls Jose telling him in Milano that when the physician turns off the computer screen, it changes the entire dialogue with the patient. He has begun to do so, and it works!  Jose makes a couple of points about this. First, simply asking that patient, "How do you feel?" and engaging with the answer makes the patient more satisfied with the visit. Second, this speaks to the idea that physicians do not realize how important they are in the lives of their patients. 

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00:00:00 - Surf's Up: Season 5 Episode 23
During SurfingMASH's wrap-up interviews from the EASL Congress (S5 E19), Louise Campbell and Mike Betel mentioned a session Mike co-chaired on challenges in provider-patient communications. Today, the other co-chair, Shira Zelber-Sagi and panelists Tom Marjot and Jose Willemse join Louise and Mike to return to this topic. 

00:13:34 - Discussing the EASL Congress session
Shira describes EASL Patient Synergies, a broad collaboration to develop open, solution-centered dialog focusing on what patients need in working with providers. Mike shares a key takeaway.

00:16:31 - Stigma in what doctors say to patients
This section covers the issue of physician saying things they do not realize patients find hurtful. If the patient would share their discomfort, the provider could adapt on the fly. Jose sees this as a two-way problem: patients do not share feeling, but when they do, most providers cannot handle them.

00:19:40 - Sending signals of attentiveness
This section covers the positive impact when the physician does something simple like turning off the computer screen and the reasons why.

00:21:06 - Preparing for a patient consult
Tom considers prior preparation and chart review vital to a successful consult. Panelists note how much more important the consult is to the patient compared to the provider.   

00:29:23 - Structural improvements for patient consults
To Tom, multidisciplinary treatment teams provide tremendous benefits in patient preparation and responsiveness, but Jose notes that many countries lack the number of nurses necessary to do so.

00:30:57 - Motivational Interviewing
Shira suggests that every physician learn the principles of motivational interviewing: asking open questions with no emotional valence. This enables the patient to share unhealthy behaviors. The panel agrees, noting that physicians can motivate and that they are most effective when tailoring to the individual.

00:38:10 - Food insecurity as risk factor
Shira asks Tom whether and how he addresses diet with his patients and, more important, he does build socioeconomic factors into the decision analysis. Tom says "Yes" about diet and healthy lifestyle, but, he says, not enough about socioeconomic issues. They agree that awareness of the impact of food insecurity  is growing and needs to grow more.

00:41:10 - Assessing mental health and quality of psychological life
The group considers the idea that a large majority of patients in a liver clinic have unmet economic or mental health needs, and discusses what to do to improve social engagement.  Tom identifies the three items patients in large studies say they seek.  The group discusses the idea that they see liver support groups, but  none are MASLD-specific.

00:46:03 - The value of lived experience in providing care
This section explores shared experience as a pivotal factor in patient-based supportive care, similar to viral hepatitis, where successfully-treated patients become integrated into the care community.

00:49:03 - Holistic metabolic disease support programs and wrap-up
Mike suggests that MASLD support programs take a more holistic approach that places MASLD in a broader context. Shira suggests adding a focus on mental health. 

As the conversation ends, two final themes emerge: (i) physicians maximize success by being actively curious in exploring each patient's needs; and (ii) joint goal setting is an excellent strategy to drive behavior change.

00:54:41 - Question of the Week
What structural or educational changes do you anticipate will improve provider-patient communication significantly, and will these changes require more from the provider, the patient or both?

00:55:14 - Business report
Information on future episodes plus a shout-out to Indonesia. 

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In this week's episode, Jeff Lazarus discusses the idea that the MASH community, including patient advocates, live in a "bit of a bubble," where the clinicians with whom they interact are part of the MASH community. Last year's ICER Public Comments session exposed them to an FDA Advisory Board of hepatologists...and it was a very different experience. Last year's conversation notes reveal what happened and the advocates' reactions:

In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingMASH revisits the topic after a public comments session that took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.

Roger begins by asking the group how the word empathy fits into this discussion. Tony shares that he was upset by the majority viewpoint of 15 featured voting members on a number of different issues. For example, 40% of these voting members suggested that a drug approval would have no impact on a caregiver’s life. Tony asserts the importance behind people needing to be aware of the impact of NAFLD/NASH not only on the patient, but also the families and those close to them. Speaking from personal experience, Wayne shares that he was perplexed on the document's position that NAFLD/NASH is not considered to be a progressive disease. This leads Louise and Roger to insert comments around the pricing and economic analysis surrounding the discussion. As the conversation winds down, Mike returns to the conundrum of the voting results. Listen on to hear why his reaction was, “I literally fell out of my chair.”

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In this closing conversation, Healthy Livers, Healthy Lives Chair Jeff Lazarus and Surfers Jörn Schattenberg, Louise Campbell and Roger Green discuss the upcoming United Nations General Assembly side event and consider ways listeners can support the "Healthy LIvers, Healthy Lives" coalition.

Jeff discussed this impact on global care when the World Health Organization develops and releases a global health sector strategy. One key goal in public health is to lobby for a MASLD strategy. To that end, Healthy Livers, Healthy Lives is holding a side event at the United Nations General Assembly meeting in mid-September.
 
 00:40:41 - Presenting MASLD to politicians
 One challenge in educating policymakers about MASLD is that people do not die from MASLD. One recent example: policymakers did not respond to the spread of SARS-CoV-2 until COVID-19 produced massive numbers of deaths.

When asked, Jeff draws the chain from MASLD to MASH to cirrhosis and end-stage liver cancer and notes that we are already seeing MASLD as a leading cause of liver transplant.

Roger suggests that Jeff reframe the issue to be about how many people die with MASLD, not from MASLD. Jeff believes this simple change may change the dialogue.
 
00:43:06 - How listeners can support this initiative
Roger asks Jeff how listeners can support the Healthy Livers, Healthy Lives initiative. Jeff suggests that we all be careful to name the disease and let people know how easily MASLD can be identified and treated. For those who work in related areas or help set policy for their organizations, make sure that MASLD is included and, whenever possible, linked to diabetes, obesity, and other relevant metabolic conditions. 
 
00:44:58 - LiverAIM and exit.
As his closing comment, Jeff discusses LiverAIM, the largest European Commission-funded liver project in 26 years. (Jörn and Maja Thiele, who is leading the 100,000-person randomized clinical trial, discuss this in Episode 15.) Roger commits to producing an episode on LiverAIM this fall. 
 
After Jeff departs, Jörn restates the importance of working with colleagues like Jeff who can systematically develop public health approaches and drive policy change from the top down. Roger agrees that a top-down approach can be extremely valuable, but may have limits in primary care. He suggests that professional organizations also need to bring allied health providers into the dialogue. 

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Healthy Livers, Healthy Lives Chair Jeff Lazarus joins Jörn Schattenberg, Louise Campbell and Roger Green to discuss the value of the updated EASL/EASD/EASO MASLD clinical practice guidelines and consider the role of Big Data in early MASLD screening. 

Roger asks Jeff whether he considers the updated MASLD CPG a step forward. Jeff praises the guidelines as "amazing" and suggests that one reason is that EASD and EASO are partners in drafting and promoting them.

Roger's next question to Jeff addresses the idea that Big Data can provide a set of common variables that will outperform FIB-4 in predicting which patients are at high risk of MASLD or MASH, as Hannes Hagstrom discussed in Episode 17 this year. Jeff believes we can use more data than only the FIB-4 today but that, in the long run,we need better biomarkers to simplify the system. Jörn adds that having historical blood tests will allow for that kind of analysis, which should be superior to FIB-4. Jeff points out the challenge: not all variables are collected in each country. Bottom line: the solution must be simple and realistic to apply in practice in different countries.
 
 

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Healthy Livers, Healthy Lives Chair Jeff Lazarus joins Jörn Schattenberg, Louise Campbell and Roger Green to discuss some of the specific structural challenges that confront global MASLD public policy, along with some promising local activities.

Louise observes that, in her experience, primary care practitioners appreciate the support that specialist nurses can bring in educating providers about the disease and patients about how to better support themselves. Jeff responds that these are good findings as individual cases, but to make major changes in the field, we need large-scale, top-down innovations. One thing that, oddly, works in MASLD's favor is that most patients with advanced MASLD will have concomitant diseases requiring involvement with other specialties. Today, teams are looking at system issues to find the largest, most intractable structural problems so that solutions can emerge. After that, "we'll start to see bigger and faster improvements in the field."
 
Jeff talks about several positive things happening in New York. First, he mentions a New York Times article about junk food and how manufacturers target aggressive marketing to poor and marginalized populations, with the net result that these populations have processed and ultra-processed foods making up a large share of their diets. Also, a "visionary" health commissioner is creating a program, Healthy NYC, with the goal of increasing life expectancy by reducing specific diseases.MASLD is not part of the effort today but with clinician support. we can get there over time.

Earlier, Jeff had commented about the ease of implementing the FIB-4 test. Now, Roger raises the issue again, this time mentioning that SurfingMASH guests from ex-US markets have mentioned that ALT is not a standard test in their countries and asks Jeff if MASLD is making progress here. Jeff discusses the debate around this issue.
 
 

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Healthy Livers, Healthy Lives Chair Jeff Lazarus joins Jörn Schattenberg, Louise Campbell and Roger Green to discuss why political will is so important in overcoming inertia and obstruction in global MASLD public health policy.

Louise notes that she left NHS because of obstruction against earlier stage efforts to promote liver health and asks how to achieve these goals. To Jeff, it all depends on political will. He provides an example from viral hepatitis to prove his point.

Roger asks how to motivate primary care practitioners who are overloaded with tasks they need to complete during short, overly scheduled patient visits.

Jeff notes this is a challenge today, with a solution that lies in education that not only teaches about the disease but also stresses the cost of inaction. To Jeff, teaching FIB-4 to primary care and automating the algorithm to make it available in every electronic patient record is the minimum we should strive for today.

Jörn focuses on the cost of inaction from a different direction: physicians who are afraid they will demoralize patients when they diagnose a disease with no available treatment. Jeff responds, "Do we not raise awareness because we don't have out-of-the-box solutions?" He goes on to describe different types of solution that might work for a patient, ranging from digital apps to linking patients to social agencies that can provide support and services. Jeff notes that "the field will need to change as we find more patients," due to increased demand on public health systems and social agencies.

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Healthy Livers, Healthy Lives Chair Jeff Lazarus joins Jörn Schattenberg, Louise Campbell and Roger Green to discuss how the coalition came into existence and to describe two initiatves aimed at increasing early screening.

Jeff starts the conversation by describing the "bit of a bubble" in which the MASLD community lives: great news and lots of excitement within, but very limited exposure to related metabolic specialties (endocrinology, primary care, cardiology) and limited awareness among the people and organizations that shape public health policy.

Jörn adds that Jeff has been working for the last 4-5 years to create a multi-stakeholder coalition to promote liver disease to relevant professional societies and public health policy shapers. Jeff notes that patient advocates, clinicians, and professional societies each have a pivotal role to play in advancing liver care, particularly MASLD care.

Healthy Livers, Healthy Lives is a coalition of four major professional organizations (AASLD, ALEH, APASL, and EASL) along with other partners, like the Indian National Association for the Study of the Liver (INASL), to raise awareness within the liver field and also other metabolic specialties. Jeff describes it as  "really trying to be an open, transparent, engaging, ambitious and aspirational coalition" with a light structure and just a few areas of focus over the next year: World LIver Day on April 19, the World Health Assembly, and the UN General Assembly.

Louise asks about efforts to promote early screening that will help patients get care earlier in their disease progression. Jeff mentions two: a project to "double the diagnosis" over the next 3-4 years, and another project to identify all the concomitant conditions with sufficient cost of disease to merit screening everyone in that group. The latter will provide the kind of data to which public policy makers respond best.

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00:00:00 - Surf's Up: Season 5 Episode 22  
Jeff Lazarus joins Jörn Schattenberg, Louise Campbell and Roger Green to discuss Healthy Livers, Healthy Lives, a coalition of four major professional organizations (AASLD, ALEH, APASL and EASL) and other partners. This coalition works with other specialties to create global public health awareness and drive "top-down" solutions that are pivotal to stemming the MASLD Tsunami.  

00:06:48 - The need for a MASLD public health coalition
Jeff starts the conversation by describing the environment in which the MASLD community lives today: great news and energy within, but minimal exposure among related metabolic specialties and public health policy shapers. 

00:11:55 -  Healthy Livers, Healthy Lives
Jeff describes the structure and goals of Healthy Livers, Healthy Lives.

00:13:32 - Two initiatives to increase early screening
In response to a question from Louise, Jeff mentions two efforts: a project to "double the diagnosis" over the next 3-4 years and another to identify all the concomitant conditions with sufficient disease cost to merit screening everyone living with that condition. 

00:16:39 - Political will and structural change
Louise asks how we can overcome obstruction within the system to promote liver health. To Jeff, it all depends on political will, the energy that converts successful localized strategies into large-scale, top-down innovation. The solutions to the most significant, most intractable structural problems that evolve this way can drive "bigger and faster improvements in the field." 

00:28:40 - Good things happening in New York 
In this context, Jeff shares how a visionary health commissioner in New York has created the Healthy NYC program to increase life expectancy by reducing specific diseases. 

00:33:00 - The updated MASLD CPG
Jeff praises the updated MASLD CPG guidelines as "amazing" and suggests that one reason is that EASD and EASO are partners in drafting and promoting them.

00:35:40 - Big Data-drive screening solutions
This section explores whether and how Big Data can provide a set of standard variables that will outperform FIB-4 in predicting MASLD risk (see S5 E17). Jeff and Jörn identify the benefits and challenges of this approach.
 
00:38:38 - The upcoming U.N. General Assembly MASLD side event
Healthy Livers, Healthy Lives is holding this event at the U.N. General Assembly meeting in mid-September. The goal is to push the World Health Organization to develop and release a global health sector MASLD strategy. 
 
00:40:41 - Presenting MASLD to politicians
One challenge in educating policymakers about MASLD is that people do not die from MASLD. Sadly, large death counts produce public sector action, as we all saw with COVID-19. Suggestion: Reframing the issue as to how many people die with MASLD, not from MASLD, may make the story easier to tell. 
 
00:43:06 - How listeners can support this initiative
Roger asks Jeff how listeners can support the Healthy Livers, Healthy Lives initiative. Listen to hear Jeff's suggestions. 
 
00:44:58 - LiverAIM and closing comments
Jeff mentions LiverAIM, the largest European Commission-funded liver project in 26 years (see S5 E15). Jörn restates the importance of working with experts in developing public health approaches that drive policy change from the top down. Channeling Louise, Roger suggests that professional organizations need to bring allied health providers into the dialogue. 
 
00:50:03 - Question of the Week
Roger asks what listeners believe they can do in their own organizations and lives to support the goals discussed today.
 
00:50:36 - Business Report
News on next week's session, Roger's office hours, and the Vault conversation.

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This week's vault conversation looks back 17 months when Ken Cusi joined co-hosts Louise Campbell, Jörn Schatenberg and Roger Green to discuss the revised AASLD Practice Guidance that had been issued the previous week. At the time, here was SurfingMASH's summary of the conversation:

Late last week, AASLD published new practice guidance on the clinical assessment and management of NAFLD. The Surfers convene with Ken Cusi, who contributed to the previous iteration published in 2018, to explore its key features and implications. The updated document reflects the many advances pertinent to any practitioner caring for patients with NAFLD. This conversation focuses on the impact this guidance may have on patients: will it make a difference and if so, how?

Ken asserts his position that both patients and providers need to be educated on solutions available today. Measures range from effective diet modifications to bariatric surgery and anti-obesity drugs. Louise Campbell reminds us that not all patients interact with physicians and that nurses, dieticians, and other allied health professionals experience more numerous contact points in terms of co-morbidity management. She asserts that guidances and guidelines need to make an effective impression on the frontline professionals, caretakers and even the patients themselves. This prompts Ken to share some exciting news with regard to the ADA formally recognizing NASH as a problem associated with diabetes. He reveals that he is chairing a committee that will work to create a consensus statement on this subject through consulting an array of stakeholders. Notably, they are inviting the participation of dieticians, diabetes educators, pharmacy representatives, obesity management leaders, primary care representatives and hepatologists, among other groups. Ken expresses his optimism for the momentous energy and convergence of fields in an unprecedented effort to collectively combat Fatty Liver diseases. Jörn adds that such collaboration will drive stronger patient advocacy and better education about what specific questions they should be asking their treaters.