Optimizing the Hepatitis Care Journey Through the Lens of a Person with Lived Experienc
In the ever-evolving healthcare landscape, the patient journey is often overlooked. Health systems have historically been designed around diseases, institutional workflows, clinical protocols, and operational efficiencies, rather than addressing the holistic needs of individuals. This approach frequently sidelines the perspectives of people living with hepatitis, as decisions are predominantly shaped by physicians, regulators, and payers.
The result?
A fragmented healthcare experience that lacks empathy and fails to consider the nuanced needs of those it aims to serve, making it difficult for disproportionately impacted individuals to navigate the healthcare system effectively.
For people living with hepatitis, chronic viral infections can lead to severe liver complications, including cirrhosis and liver cancer. Underdiagnosis and reluctance to seek diagnosis and clinical care often stem from low awareness, misinformation, and fear. Compounding these challenges is the stigma associated with hepatitis, particularly in relation to behaviors such as drug use or unprotected sex, which can heighten the risk for certain individuals. This stigma can deter individuals from seeking testing or treatment due to fear of judgment or discrimination from healthcare providers and society. Moreover, it can lead to internalized shame, adversely affecting the mental and emotional well-being of those living with hepatitis and exacerbating their reluctance to engage with the healthcare system. Consequently, underdiagnosis and delays in receiving care become prevalent, resulting in missed opportunities for early management of the condition and ultimately leading to poorer patient and public health outcomes.
The Importance of Person Centricity
Humanizing the journey of a person with hepatitis is not just an ideal; it is a necessity to find the missing millions. It is increasingly recognized that people-centered policies and frameworks improve community engagement, health literacy, access to healthcare services and linkage to care. Empowering people living with hepatitis transforms them into informed stakeholders and enables them to provide continuous feedback towards national hepatitis responses. It also facilitates the ability to make necessary adjustments based on real-time feedback, enabling policies to remain responsive and address the needs of people living with hepatitis. Incorporating people with lived experience from day one in national hepatitis response can inform necessary nuanced policy approaches to address socioeconomic discrepancies amongst special populations who are observed to be at higher risk of infection of viral hepatitis. Engaging people living with hepatitis from early on fosters trust, mitigates uncertainties, and enriches our understanding of their needs, especially among rural and key populations.
Unfortunately, widespread stigma and discrimination can have a detrimental impact on the lived experiences of individuals with hepatitis. Tragically, a young university student took her own life due to the mental stress of social isolation and stigma following a Hepatitis B diagnosis. Furthermore, women living with hepatitis frequently encounter immense pressure to terminate pregnancies due to deeply ingrained misconceptions that children born to mothers with hepatitis are inherently "unclean" or at a higher risk of health issues.
Similarly, individuals living with hepatitis from regions where the response to the disease is limited by a lack of resources often fear discrimination when traveling to places where stigma surrounding hepatitis is deeply ingrained in social norms. These experiences highlight the urgent need for healthcare systems to combat stigma and create an environment where individuals feel safe and supported in seeking help.
The need to respond to individuals' preferences for information, psychosocial support, and involvement in decision-making must also be respected. A truly compassionate and supportive health system adopts a comprehensive approach that considers the varied needs of all parties involved. In this model, effective healthcare organizations, policymakers, skilled practitioners, and engaged individuals, families, and communities collaborate to foster a more responsive and positive healthcare experience.
The WHO’s 2024 Guidelines: A Step Towards Person-Centered Care
The World Health Organization (WHO)'s consolidated guidelines on person-centered viral hepatitis strategic information to support country scale-up of hepatitis prevention, diagnosis and treatment services offer a promising shift towards more person-centered care.
Strengthen Care Cascade via Person Centricity: The guidelines recommend the creation of a person-centered treatment database to identify gaps and manage attrition. This approach addresses previous complexities and barriers to effective care.
Person-Centered Data Monitoring to Enhance the Care Cascade: Disaggregated data and person-centered monitoring are essential for improving hepatitis programs, allowing better support for the prevention, diagnosis, and treatment of targeted health interventions tailored to individual needs.
Improving Service Provision and Interventions through Person-centered Insights: Person-centricity ensures that prevention, screening, and treatment interventions consider the diverse factors influencing accessibility and coverage for various subpopulations accessing health services. By measuring changes in the patterns of new diagnoses, these interventions can be organized around the health needs, preferences, and expectations of individuals and communities.
Leveraging Person-Centered Data to Strengthen Decision Making: Person-centered data and insights can identify geographies and population groups at higher risk, highlighting areas that require increased attention and resources. By analyzing what is working effectively and where challenges exist, stakeholders can enhance linkages and systematically address program gaps, enabling a more effective prioritization of efforts.
This shift toward person-centricity in hepatitis responses reflects a growing recognition of the need for a more holistic and person-centered approach.
Implementing Person-Centric Care in Hepatitis Management
To optimize the journey for people living with hepatitis, tailored interventions at critical junctures are key. By considering each stage of the hepatitis care continuum—from prevention to screening, diagnosis, treatment and ongoing support—healthcare providers, policymakers, and most importantly people with lived experience can enhance responsiveness, address stigma and discrimination in various settings, and improve patient outcomes and experience.
Policymakers play an essential role in transforming commitments and policies into concrete actions that lower thresholds and enhance access to healthcare services. Particularly for conditions that face intrinsic stigma and social discrimination, the most effective way to improve access is to reframe approaches towards a national hepatitis response from a person-centric lens. Integrating the insights and inputs of people with lived experience when shaping health policies will drive the prioritization of the health and well-being of patients above personal or political interests to address their genuine concerns and create policies that will address pragmatic unmet needs.
Moreover, policymakers have a crucial responsibility not only to develop effective policies but also to ensure their successful implementation. This requires creating clear and actionable plans that outline the execution of proposed initiatives, including specific objectives, timelines, and necessary resources. By taking proactive steps to define these elements, policymakers can effectively translate their initiatives into practice, delivering meaningful benefits to the communities they serve. This approach emphasizes the importance of accountability, collaboration, and responsiveness throughout the entire process.
Effective Communication: Delivering accessible updates, educational resources, and personalized support tailored to different key populations will enhance their understanding of viral hepatitis. This approach aims to alleviate fears regarding available support and resources, encouraging individuals to seek testing and treatment while guiding them toward care.
Incorporating Feedback: Developing policies that integrate the perspectives of patients with lived experiences will help identify gaps and barriers, allowing for precise optimization of national hepatitis responses. By continuously incorporating feedback into service design, healthcare systems can adapt to evolving patient needs and enhance the quality of care.
Empowering People Living with Hepatitis: Transforming individuals living with hepatitis from passive recipients to active participants in their care can significantly improve outcomes. Involving them in treatment decisions and providing support throughout their journey fosters trust and encourages better health management.
Ultimately, a person-centered approach recognizes individuals living with hepatitis not just as recipients of care, but as essential collaborators in the healthcare process. By valuing and integrating their lived experiences, particularly in the context of hepatitis management, we can create a more responsive, effective, and compassionate healthcare system that truly meets the needs of every individual.
As such, we are proud to announce that the APAC Liver Disease Alliance hosted its inaugural Hepatitis Summit, titled “Hep-free: Eliminating Asia’s Silent Public Health Threat by 2030,” on October 1, 2024, in Bangkok, Thailand. Co-hosted with Thailand’s Ministry of Public Health, this event marked a significant milestone in our shared efforts to address liver disease in the region. The Summit emphasized the importance of prioritizing people in the fight against viral hepatitis, featuring a panel discussion themed ‘Optimizing the patient journey’. The panel discussion was led by Dr. Saeed Hamid, Professor and Chair of the Department of Medicine, Aga Khan University, Pakistan, Dee Lee, ILCM, Chris Munoz, Advisor, Yellow Warriors Society Philippines, the Philippines, Diana Rose De Silva, Yellow Warriors Society Philippines, the Philippines and will be moderated by Dr. Bethany Holt, Associate Director of Health Systems, Program in Global Primary Care and Social Change, Harvard Medical School, United States of America.
As we approach the WHO’s 2030 target, we are confident that the APAC Liver Disease Alliance Summit served as a key catalyst in accelerating efforts and fostering the collaboration needed to make a hepatitis-free future a reality.
Co-authors: Dee Lee and Dianne De Silva
