Published on: March 3, 2025

The World Congress of Nephrology (WCN) 2025 hosted a transformative session on February 9th, focusing on the meaningful involvement of lived experience champions and communities in combating chronic kidney disease (CKD) and other non-communicable diseases (NCDs). This pivotal event illuminated the critical role of patient-centered approaches in addressing the growing burden of these conditions.
The interplay between CKD and NCDs such as diabetes and hypertension created a complex health challenge. A pivotal approach to mitigate this burden was the meaningful involvement of individuals with lived experience and robust community engagement. The session explored how to move beyond tokenistic involvement, ensuring that patient voices were not only heard but actively translated into actionable strategies.

Meaningful engagement transcended simply inviting patients to speak. It necessitated a deeper commitment to understanding and acting upon their lived realities. By empowering patients and communities, the session aimed to foster environments where early detection, lifestyle modification, and adherence to treatment protocols became attainable realities. Attendees advocated for a “whole of society” approach, recognizing that health is a shared responsibility. Integrating healthcare providers, patients, policymakers, and community leaders was deemed essential to ensure that interventions were culturally sensitive, accessible, and sustainable, ultimately reducing the global burden of CKD and NCDs.

The session, held at the Yashobhoomi (India International Convention and Expo Centre), examined people-led approaches to augment the prevention and control of CKD and co-existing NCDs. The focus was on identifying evidence-based strategies that informed models of meaningful engagement for lived experience champions and communities. It also traced the journey of meaningful involvement of people living with NCDs in India and the Southeast Asia region, and its inclusion in the operational guidelines of India’s National Programme for NCD Prevention and Control (NP-NCD).Real-life lived experience sharing underscored the need for more people-friendly health systems to enhance treatment outcomes for CKD and other comorbidities. Discussions explored policymaker perspectives and how communities could work in tandem with governmental efforts to provide high-quality, accessible, affordable, and equitable NCD services.

The session commenced with an overview by Dr. Monika Arora, followed by presentations from Ms. Radhika Shrivastav and Dr. Shikha Vardhan. Ms. Shrivastav emphasized the collective effort of partner organizations and highlighted the Global Charter on Meaningful Involvement of People Living with NCDs. Dr. Vardhan detailed the evolution of India’s NP-NCD, highlighting the importance of lifestyle management and community involvement.

A panel discussion followed, featuring Dr. Pradeep Joshi, Ms. Seema Bali, Ms. Yangchen Dolma, and Ms. Magdalena Machalska. Ms. Dolma emphasized the financial burden faced by patients and the importance of nurse-led NCD clinics. Ms. Machalska discussed the ISN’s efforts to integrate patient voices into its advocacy.

Key Takeaways

The session concluded with an open discussion and a summary by Dr. Arora. Key takeaways included the need for holistic care approaches, the untapped potential of nurses in patient engagement, and the importance of addressing the financial burden faced by patients. The discussion emphasized the need for updated healthcare professionals and meaningful patient engagement.

The session at WCN 2025 served as a crucial platform for transforming collective knowledge into actionable strategies. By prioritizing prevention, early detection, and holistic care, and by truly amplifying the voices of those with lived experience, the session aimed to contribute to a more equitable and effective healthcare system.

Attended & Written By: Preeti Chauhan (National Policy Head, Pallium India)