Kuala Lumpur recently hosted the Global Patient Partnership Summit, bringing together around 100 patient advocates from 15 countries, including Singapore, Thailand, Indonesia, the Philippines, China, South Korea, India, Japan, Australia, the UK, New Zealand, Spain, France, Germany, and South Africa, alongside Malaysian participants and global healthcare leaders.
Organised by global pharmaceutical company Boehringer Ingelheim (BI), the summit focused on the role of patient organisations and was part of a global event held simultaneously in Spain. While the Malaysian summit began earlier due to time zone differences, both events covered the same core topics and discussion points.
Participants shared impactful projects and successful policy changes that are beginning to reshape healthcare in their respective countries. A key highlight was the introduction and growing adoption of Patient Experience Data (PED), an initiative central to BI’s evolving approach. Moving beyond traditional research on medicines and therapies, BI is now prioritising patient engagement to better understand when and how treatments truly benefit those they are designed for.
One critical area of discussion was the importance of making clinical trials more patient-friendly. This includes improving the design of application forms to be more understandable and accessible, ultimately resulting in more meaningful data and better patient participation. Involving patients and policymakers particularly in the EU has proven effective in improving cost management and making healthcare systems more efficient and responsive.
Incorporating in-trial patient feedback and adapting pharmaceutical development processes accordingly has also helped save both time and costs, accelerating access to treatment while addressing healthcare affordability, a growing concern worldwide.
Beyond structured discussions, the summit offered a valuable space for patient advocates to connect, share experiences, and exchange best practices that could be adapted across borders. Among the innovative ideas that sparked strong interest was South Korea’s “Shouting Café” initiative.
In this unique format, patients gather in a casual café setting where anyone can step up and share their healthcare experiences, emotionally, openly, and without judgment. The audience, often including media and policymakers, responds with suggestions and feedback on how the system could be improved. Remarkably, many of these community-driven recommendations have made their way into parliamentary discussions in South Korea, leading to tangible healthcare improvements. The success of the Shouting Café has seen it replicated in other cities across the country.
Another noteworthy initiative came from Kidney Health Australia (KHA), which launched the “End Dialysis 2050” campaign. This forward-looking project seeks to raise awareness about kidney health and promote kidney transplantation as a more sustainable and equitable alternative to dialysis. KHA has successfully engaged with parliamentarians, the media, and key government spokespersons to push for meaningful change in kidney care.
As more countries recognise the value of including consumer perspectives in healthcare policy, the role of expert patient advocates is becoming essential. Healthcare providers and policymakers are increasingly turning to digital tools and community engagement strategies to better understand patient needs, address gaps in care, and co-design more inclusive, responsive systems.
At the summit’s conclusion, there was a strong consensus: the most impactful ideas must be shared, adapted, and amplified globally. The collective agenda moving forward is clear - to keep pushing for reforms that centre patient voices and improve healthcare outcomes for all.
