Planting the seeds: cultivating patient and public involvement in Asia

Dr Gary Hickey, Chair of the International Patient and Public Involvement Network

For decades, global conversations around Patient and Public Involvement (PPI) in health research have been dominated by models from the Global North. Frameworks developed in the UK, Canada, and Australia were frequently viewed as the default blueprint for the rest of the world. However, during a recent international roundtable co-hosted by the International PPI Network and the Office of Patient Engagement (OPEN) at Nanyang Technological University (NTU Singapore), a clear consensus emerged: Asia is not a passive recipient of global health concepts—it is actively cultivating its own vibrant, context-driven PPI ecosystem.

Bringing together over 200 researchers, clinicians, patient advocates, and policymakers across more than 16 countries, the event ‘Advancing Patient and Public Involvement in Asia – Research with the People for the People’ demonstrated that patient involvement in Asia is far from a "black box." We had great contributions from Ai Ling Sim-Devadas, Aparna Mittal, Chris Munoz, Ellil Mathiyan Lakshmanan, Kazuto Kato, Fiona Pearce and Arishay Hussaini. And the round table panel discussion was superbly moderated by LKCMedicine’s Assoc Prof Jo-Anne Manski-Nankervis.

A Mosaic of Local Progress

Across Asia, progress is unfolding in diverse and creative ways. Preliminary scoping data presented by OPEN revealed that over 180 peer-reviewed articles on PPI feature Asian co-authors, with substantial activity originating from Japan, China, India, and Singapore.

In Japan, the national funding agency AMED published a national PPI Guidebook in 2019 and recently launched major grant programs to embed patient partners into mainstream medical research. In Pakistan, critical care researchers established a national network spanning 13 institutions, launching a bilingual PPIE Toolkit in English and Urdu to demystify research for the public.

In India, partnerships between the National Cancer Grid and organizations like Patients Engage have led to structured six-month training programs (PARC) for patient advocates, enabling them to actively review oncology protocols and sit on clinical guideline committees. In Singapore, ongoing efforts are being made to establish national guidelines to integrate patient voices directly into medical education and study designs.

As one speaker noted, growing PPI in Asia is not a plug-and-play exercise imported from abroad—it is more like gardening. It requires understanding local soil, planting seeds, nurturing relationships, and applying sustained, long-term care.

Confronting the Asian Reality: Hierarchies and Language

Despite these milestones, panelists candidly addressed the formidable barriers facing Asian advocates. Chief among them is cultural hierarchy. In many Asian societies, the traditional "doctor knows best" dynamic runs deep. Patients—particularly women, elderly individuals, and marginalised groups—often feel hesitant to question medical authorities or view their lived experience as valuable scientific data.

To dismantle these barriers, trailblazing teams are reshaping how involvement happens. In Pakistan, research panels intentionally exclude senior professors and department heads during initial patient discussions to flatten power dynamics and ensure female caregivers feel empowered to speak freely.

Other barriers include technical jargon and a lack of dedicated funding. Patients are too frequently brought in at the eleventh hour—asked to proofread a consent form rather than co-designing research questions. Furthermore, as highlighted by Health Technology Assessment (HTA) experts, formality does not equal influence. Even where formal pathways exist, mechanisms to provide feedback to patients about how their input shaped final decisions remain rare.

The Path Forward: Embedded, Equal, and Essential

To transition PPI in Asia from isolated pockets of excellence to routine practice, panel members called for decisive structural action:

Policy and Funding Mandates: National funding bodies must recognise PPI not as an optional extra, but as a core requirement for research grants.

Structured Capacity Building: Sustainable training pathways must be established for both patients (to navigate health systems) and researchers (to learn meaningful engagement).

Language Equity: Research materials, plain-language summaries, and toolkits must be made available in native languages and accessible formats.

Bi-directional Learning: Global partners must engage with Asian institutions with humility, co-creating solutions tailored to local cultural contexts rather than imposing foreign templates.

As medical research and clinical trials expand rapidly across Asia, involving the people who live with these conditions is no longer just an ethical ideal—it is a scientific necessity. By nurturing local champions, institutionalising feedback, and honouring lived experience, Asia is laying the groundwork for health research that is truly with the people, for the people.

We will be exploring all of these issues, and more, at a follow-up event, following which we intend to publish a paper. Watch this space.

Finally, a big thank you to all who attended this event.

The recording of the event is available here: https://www.youtube.com/watch?v=DZP6NB6T_WM&t=270s

If you are interested in partnering with the International Patient and Public Involvement Network, or would just like an exploratory chat, then please email Ricky Piper: ricky.piper@nihr.ac.uk