Webinar Report: Patient Advocacy in Asia Pacific Region

The WPA Asia Pacific Region organized a webinar titled " Patient Advocacy: Driving Change in Healthcare " on April 23, 2025. The event brought together patient advocates, healthcare leaders, and policy influencers from across the world especially, Asia Pacific region. The goal was to explore the fundamentals of patient advocacy, share successful case studies, and encourage stronger regional collaborations.

The webinar was accessible through AI-powered simultaneous translation into over 50 languages, ensuring broad inclusivity.

Welcome and Opening Remarks:
The webinar opened with a warm welcome by Andrew Spiegel, Chair of the World Patients Alliance. He emphasized the importance of patient voices in shaping healthcare policies and systems.
Following his remarks, Andrew introduced the moderator, Hussain Jafri, CEO of WPA. Hussain outlined the agenda, objectives, and introduced the distinguished speakers.

Key Objectives of the Webinar:
• Strengthen patient advocacy efforts across the Asia Pacific region.
• Share successful advocacy models and practices.
• Encourage the use of evidence-based approaches in patient advocacy.
• Foster collaboration between patient groups, healthcare providers, and policymakers.

Key Presentations:

Introduction and Fundamentals of Advocacy

Tamás Bereczky provided an insightful presentation on the definitions and distinctions between advocacy and activism. He emphasized that both are essential tools for creating social and political change. He discussed the critical role of evidence-based advocacy, urging patient organizations to base their campaigns on data and research rather than anecdotal experiences.

Tamás highlighted challenges patient organizations face, such as limited knowledge and resources for conducting research. He presented models of patient involvement in research, policy, and healthcare design, showing how patient-driven data can influence real change.

Case Studies on Patient Advocacy from WPA Asia Pacific Region

Edmund Lau

Edmund Lau shared his journey of advocacy through the Psoriasis Association of Singapore. He introduced two models for driving policy change: the TAQA Model (Timely, Affordable, Quality, Access) and the 4Es Model (Education, Exposure, Exploitation, Exploration).

He presented the advocacy campaign by Psoriasis Association of Singapore to emphasize the urgent need to recognize psoriatic disease as a systemic illness, not just a skin condition. Through sustained advocacy around World Psoriasis Day, his team influenced healthcare reforms focused on holistic care, early intervention, and mental health support.

Mecciya Majrashi

Mecciya Majrashi presented the story behind Motaafi Cancer Care Association, Saudi Arabia. She outlined how advocacy can be structured through an “Advocacy Plan," including environmental scans, policy analysis, power mapping, goal setting, and dissemination strategies.

Mecciya stressed the importance of training advocates, building strong media connections, and continually evaluating advocacy efforts. Her experiences, both as a cancer survivor and advocate, demonstrated the value of perseverance, strategic planning, and collaboration with civil society networks.

JS Arora

JS Arora shared the inspiring journey of thalassemia advocacy in India. His work led to the inclusion of Thalassemia under “Benchmark Disabilities" in India's Rights of Persons with Disabilities (RPWD) Act 2016.

He described years of lobbying, protests, and public campaigns that finally secured legal rights for thalassemia patients, including free healthcare, education benefits, and social security schemes. Despite progress, he pointed out ongoing challenges like the lack of job reservations for thalassemia patients in government employment, showing that advocacy is an ongoing effort.

Panel Discussion and Q&A:

The panel discussion, moderated by Hussain Jafri, brought together all speakers to share reflections on the future of patient advocacy.

Key themes included:

• Evidence-based Advocacy: All speakers agreed on the need for professionalizing advocacy through data collection and research.
• Community Engagement: Engaging patients directly in research design and healthcare decisions was highlighted as a priority.
• Policy Influence: Advocates stressed working collaboratively with policymakers and other health care stake holder to embed patient voices in healthcare reforms.
• Challenges Ahead: Speakers shared concerns about sustaining advocacy movements, especially with limited resources in some regions.
Audience questions sparked discussion on building resilient patient organizations and navigating cultural barriers in advocacy.

Key Takeaways
1. Invest in Capacity Building: Train patient advocates in evidence based data collection, policy engagement, and communication skills.
2. Leverage Data: Base advocacy campaigns on strong evidence to increase credibility and impact.
3. Foster Cross-Sector Collaboration: Work with healthcare providers, academia, and civil society to amplify patient voices.
4. Sustain Momentum: Develop long-term strategies to keep advocacy efforts alive beyond short-term projects.

The webinar highlighted the growing strength of patient advocacy in the Asia Pacific region. Through shared experiences, practical models, and collective learning, advocates can build a more patient-centred healthcare environment. The WPA remains committed to supporting patient voices and advancing safe, accessible, and quality healthcare for all.