We must address the MASLD awareness gap, improve educational quality and prepare for the digitally quantified self

Abstract

Ding et al. report on the potential risks associated with video content on metabolic dysfunction-associated steatotic liver disease (MASLD) from medical professionals and non-medical individuals. The authors highlight the rapid proliferation of internet-based health information, which is often a primary information source for many patients.¹

‘Internet-informed patients’ are commonly described in other clinical settings, including primary care. Ding et al. highlight the often inadequate quality and reliability of internet-based health videos, whether developed by medical professionals or general users, and cautions against their use by patients living with MASLD.¹ Though dis-, mis- and mal-information are often discussed in the context of infectious diseases,² health systems must also address infodemic-like threats related to non-communicable disease (NCD) health risks, including MASLD. Artificial intelligence (AI) generated MASLD videos and other content, for example, which can be rapidly generated, must be carefully reviewed in order not to exacerbate information risks.

In accordance with global action priorities for steatotic liver disease (SLD) published in 2023,³ we amplify one of Ding et al.'s key conclusions: health professionals, together with platforms, should generate and disseminate reliable information.¹ This includes not only the MASLD awareness videos reviewed in the study, but also more formal educational material and, crucially, skills-oriented training for patients and health workers. Hepatologists should be aware that the rise of digital information, the internet of things and internet-informed patients have led to a new type of patient: the digitally ‘quantified self’. As mentioned, this shift has already been observed in primary care and in metabolic medicine-focused and mental health settings by physicians and allied health professionals.⁴

In the near term, particularly considering the recent United States Food and Drug Administration (US FDA) approval⁵ of resmetirom to treat metabolic dysfunction-associated steatohepatitis (MASH) and the promising MASH-related outcomes from drug treatments for other NCDs,⁶ health systems should increase MASLD/MASH-related awareness among those at-risk for and living with the conditions through accurate, evidence-based and tailored communications, and provide health education and skills-training for those requiring MASH pharmacotherapy. Health systems should prioritise awareness raising and system integration for MASLD/MASH testing and diagnostics among settings beyond those specialising on the liver, as these places are where most people with liver disease are seen. Longer term, as other practices are already adapting to digital quantification and diagnostic decentralisation,⁷ we advocate that health systems prepare now for the near future.

As Ding et al. underscore, drawing from the broader evidence base, MASLD awareness remains low in most countries,¹ mirroring regional and global consensus on education and awareness matters from the MASLD/MASH community of practice; in 2022, conscious of the MASLD awareness gap, a 91-country, 200+ volunteer panel with backgrounds in medicine, policy, public health and health systems achieved consensus to promote awareness, education and knowledge about the disease.⁸ Then, in 2023, another global panel proposed a new nomenclature for NCDs associated with SLD, such as MASLD/MASH. These name changes provide the field with a unique opportunity to raise awareness among the public, at-risk populations and healthcare providers, including those involved in the management of common comorbidities (e.g. endocrinologists and obesity specialists). Furthering this work, global consensus on research (e.g. identifying the educational needs of healthcare providers)⁹ and action (e.g. expanding the availability of educational courses and toolkits) priorities was built.³

Even among digitally sophisticated, often younger, at-risk people, specific awareness of MASLD/MASH is quite low.¹⁰ Other factors, including demographics (e.g. ethnicity),¹¹ may skew awareness levels even lower or, in the case of people from families with a history of liver disease, possibly higher. Certainly, as awareness increases, beliefs and practices change in people living with more severe disease.^{12, 13}

Health systems should be cognisant of the low awareness of MASLD/MASH not only among the general population and those at-risk but also among physicians and allied health professionals. Global surveys demonstrate low awareness beyond the specialist fields of gastroenterology and hepatology. Alarmingly, though most patients living with MASLD/MASH will die from cardiovascular disease, cardiologists report low confidence in the diagnosis or management of MASLD/MASH, partly because they self-report the lowest familiarity with symptoms and diagnostic criteria.¹⁴

Given this low MASLD/MASH awareness level among non-liver specialists, we are concerned—but not surprised—by Ding et al.'s finding that even medical professional-associated video content contained quality and completeness issues.¹ Multidisciplinary MASLD/MASH care models require educational pathways for non-liver specialists caring for these patients and managing their cardiometabolic comorbidities.^{15, 16} We envision collaborative cardiometabolic management between cardiology and hepatology recognising that, ‘Our patients are your patients too’.

In universal health coverage settings, the field must provide evidence of health awareness gaps and needs and then make a compelling case for expanded awareness, education and skills-development investments. This process typically involves considering the broader context of community health education interventions. Healthcare systems often seek several types of evidence, including population-based surveys of general awareness levels, as well as targeted surveys among at-risk persons, patients and a wide spectrum of physicians and allied health professionals. Promisingly, surveying is currently underway in Scotland to build a compelling evidence base for MASLD awareness among the general population.¹⁷ This should provide a unique snapshot of the United Kingdom (UK) and inform other regions collecting similar data.

We stress the importance of directly incorporating patient voices, and that of parents or guardians in the case of children living with MASLD, in building the evidence base around gaps and advancing initiatives. Public health systems should also weigh the long-term benefit impact on the human and economic burden of MASLD via public health interventions, including initiatives focused on NCD awareness and education, compared to direct healthcare expenditures; public health interventions often deliver greater overall health improvements at a lower cost.¹⁸

Fortunately, in many areas, practitioners do not start from ‘zero’ for awareness, education and skills-building materials. Government agencies, professional societies and non-governmental organisations have meaningfully added to the body of awareness and education-based material.

We caution, however, that some clinical settings often rely on general pamphlets or self-direction to websites. Particularly in the age of expanding treatment and care options (e.g. resmetirom, personalised nutrition) and precision medicine (e.g. targeted treatments and interventions), we should move beyond generic brochures, toward tailored patient education, training and skills-building material, particularly those that consider non-pharmaceutical interventions. Notwithstanding potential risks, we believe AI also presents intriguing potential in this regard.

We celebrate the expansion of awareness and educational literature that facilitates important dialogue among and between practice areas across the spectrum of the broader metabolic dysfunction continuum. However, given the global shortage of gastroenterologists and hepatologists, skills-building on MASLD/MASH diagnosis and early-stage treatment is crucial in multidisciplinary practice evolution.

We foresee a rapidly shifting MASLD/MASH landscape. First, the US FDA approval of resmetirom, with probable fast-following European Union (EU) and UK approvals, will increase demand for diagnoses and, in many cases, treatment. Second, given the high and growing prevalence of MASLD in children, the average age of clinically significant fibrosis will shift younger over time in many countries. Third, there are already untold millions of undiagnosed people in primary care waiting areas, where MASLD-oriented educational materials are rare compared to other NCDs and infectious diseases.

As the patient cohort expands, the age of onset decreases and the diagnosis pace accelerates, the preferred form of communication for awareness, education and skills-building materials will also evolve. The digitally quantified self is increasingly a phenomenon, particularly among younger and middle-aged consumers who purchase and deploy a range of self-monitoring devices and applications.⁴ It is improbable that pamphlets, static portable document formats or self-directed links will be sufficient or acceptable.

Building on a study of the readiness of liver specialists in Spain to uptake digital health interventions in MASLD care,¹⁹ the EU LIVERAIM initiative will update and expand that research to other EU countries.²⁰ Future findings will more clearly identify education and skills-building opportunities for European gastroenterologists and hepatologists.

We have much to learn from the intersection of patient education and digital health in metabolic syndrome related NCDs, such as digital home monitoring of type 2 diabetes. For MASLD, how might increased skills-building, coupled with digital monitoring, expand patients' treatment and care to improve health outcomes? Minimal gains in the decentralisation of MASLD testing and monitoring, expansion of AI use-cases (like treatment coordinating chatbots) or enhanced integration via patient devices with clinical settings could significantly move the field.

Ding et al. clearly demonstrated that we are not currently ‘winning’ on TikTok in developing MASLD-specific social media content that is concise, accurate and palatable to target audiences.¹ If we cannot engage in such rudimentary social media practice, then we are under-prepared for the near-future patient who represents a MASLD version of the digitally quantified self.

User-generated content, the quantified self, linking consumer preferences for communication methods and anticipating consumer behaviour in the context of digitally enabled systems: these are not innovative ideas. We can and will learn to ‘walk’ digitally via accurate MASLD awareness materials, tailored educational content and effective skills-building training. Thereafter, though, we must prepare to ‘digitally run’, because the age of the quantified self is already upon us in other medical and health systems settings addressing metabolic dysfunction-related NCDs. It is coming soon, too, to gastroenterology and hepatology.

This work received no funding.

PNB acknowledges consultancy fees from Resolution Therapeutics and educational honoraria from Takeda, outside of the submitted work. NP acknowledges speaking fees from AlfaSigma, Gilead and Gore, outside of the submitted work. JVL acknowledges grants to ISGlobal from AbbVie, Boehringer Ingelheim, Echosens, Gilead Sciences, Madrigal, MSD, Novo Nordisk, Pfizer and Roche Diagnostics, consulting fees from Echosens, NovoVax, GSK, Novo Nordisk and Pfizer and payment or honoraria for lectures from AbbVie, Echosens, Gilead Sciences, Janssen, Moderna, MSD, Novo Nordisk and Pfizer, outside of the submitted work. CJK has no conflicts of interest to disclose.