Why I Keep Showing Up for Patient and Public Involvement in Research

By Ellil Mathiyan Lakshmanan, PBM (COVID-19), EUPATI Fellow; Patient Partner and Task Force Member, OPEN Voices, Lee Kong Chian School of Medicine; President, Ostomy Association of Singapore

My journey in patient and public involvement

In March 2011, I was diagnosed with two primary cancers at once. Surgery left me with a permanent stoma, and in the years since I have also gone through open heart surgery and a pulmonary embolism. I did not choose this path into patient advocacy — it chose me, somewhere between hospital wards and follow-up appointments, when I realised how much I needed other patients who had walked the same road.

That realisation led me to co-found the Ostomy Association of Singapore, so that no one newly diagnosed would have to figure out life with a stoma alone. In 2016, an introduction to SPAN, the SingHealth Patient Advocacy Network, opened a different door: working directly with healthcare teams, not just alongside other patients, to improve outcomes and experience across conditions.

Then came an invitation to join OPEN Voices at the Office of Patient Engagement, Lee Kong Chian School of Medicine. I said yes because I had started to understand something important: patients should not be brought in only after the key decisions have already been made. We need a seat at the table from the start, helping shape the research question itself, so that the studies that follow are designed around what patients can realistically manage, measure what actually matters to patients rather than only what is easy to measure, and produce results that clinics can explain to patients and families in plain language.

I know this matters because research has already changed the course of my own care. The treatments that carried me through two cancers, open heart surgery, and a pulmonary embolism all exist because patients before me took part in the studies that proved they worked. Every scan protocol, every surgical technique, every medication I have relied on was shaped, at some point, by evidence built with patient participation. Good research is not an abstract good for future patients — it is the reason I am still here to write this.

Why patient and public involvement matters

By the time I completed the EUPATI Patient Expert Training Programme in patient engagement in medicines research and development, I already had a strong personal sense of why patient involvement mattered. EUPATI gave me the framework to explain it properly. Patient input, applied early and throughout the medicine development pathway — from identifying unmet needs and shaping study design through to regulatory review and health technology assessment — improves the relevance and quality of research, and builds the transparency and trust between patients and the researchers, regulators and companies who serve them. That is not a nice-to-have. It is what makes research worth doing.

Advancing patient and public involvement in research in Asia

In Singapore, I am glad to be one of many contributing to this infrastructure — not only for patients, but for the researchers and clinicians who partner with us too. As Steering Committee member and patient partner with RISE, the Research Institute for Cancer Prevention, Screening and Early Detection, I sit at the table from the start of a study, not only at its conclusion. I have also contributed to an NMRC grant application and to the development of Singapore's national PPI guidance for health research, where one idea I keep pushing is training on both sides of the table: patient partners need training to contribute meaningfully alongside researchers and clinicians, and researchers and clinicians need training too, to work well with patient partners. We are both experts — one in the science, the other in lived experience — and the partnership only works if both sides are equipped for it.

None of this happens quickly, and none of it happens alone. That is exactly why the Advancing Patient and Public Involvement in Asia Round Table matters. This event – a partnership between the International Patient and Public Involvement Network and OPEN, Singapore - will bring together stakeholders from across the region and explore ‘Where are we now, and where do we want to go?’ We need to compare notes across the region, be honest about what is still missing, and build something durable together.

If any part of this resonates with your own journey, I would love to see you there. Join us at the IPPIN/OPEN Round Table on 5th August 2026 — register here: https://zoom.us/webinar/register/WN_vk2d_lK2RFucDVWrjaHjAA