Malaysia’s clinical research ecosystem has grown rapidly. Our hospitals, universities, and industry partners produce studies, publish papers, and host conferences to showcase progress.
There is no shortage of presentations, panels, and discussions about innovation and discovery. But one group almost never makes the guest list: patient organisations.
Despite being the very reason research exists, patients remain outside the room. Research is still framed as something done for patients, not done with them.
A Comfortable Room, A Missing Voice
In most research forums, the pattern is familiar. Clinicians present, academics analyse, and industry highlights its partnerships. It is a comfortable room where everyone speaks the same technical language — and congratulates one another for progress.
Patient voices are rarely included. When patients are invited, they are often steered toward storytelling rather than substantive engagement. They are almost never part of the real conversations in the room — the discussions where priorities are set, policies are shaped, and decisions are made.
It is easier, perhaps, to talk about patients than to talk with them.
Outdated Assumptions, Overlooked Expertise
For too long, patients have been viewed as lacking the expertise to contribute to research. This assumption may once have gone unchallenged, but today it is both outdated and damaging.
To continue believing that patients are unqualified is to ignore the reality of modern health systems, where patients are recognised as essential contributors, not passive subjects.
Many patient leaders today are professionals from various backgrounds, with high-level academic qualifications — and many are also scientists themselves. They have gained national and international experience through local and global training programmes, advocacy platforms, and policy engagements.
More importantly, patients hold an expertise no textbook can teach: the daily reality of illness. They know which outcomes matter in real life, which side effects are tolerable, which system barriers block access to care. Ignoring this perspective does not protect research — it weakens it.
Not Just Token Invitations
Some may argue that patients or NGOs have been invited to research events. And yes, occasionally one or two representatives are added to the programme.
But a token slot at the end of a conference — or inviting only patients who have participated in trials to share their stories — is not the same as meaningful involvement.
There is a fundamental difference between patients as trial participants and patient organisations as strategic partners. Telling the story of one person’s journey may be powerful, but it does not shape policy.
What is missing is structured engagement with patient organisations that represent entire communities — those who can advise on research priorities, identify systemic gaps, and guide policymakers on what matters most to patients across the board.
Meaningful inclusion means more than listening politely. It means involving patient organisations at the start: in agenda-setting, reviewing study protocols, advising ethics committees, and shaping national research and health policies. Without this, invitations remain symbolic.
Until that shift happens, Malaysia’s clinical research agenda will remain incomplete — built on impressive technical discussions, but without the foundation of lived experience that makes research relevant and trusted.
Beyond Disease Boundaries
Research is multidisciplinary by nature. Discoveries in genomics influence cardiology. Cancer research informs rare diseases. Dermatology overlaps with immunology. If science itself crosses boundaries, why should invitations remain confined?
General clinical research events should therefore include all PAGs, regardless of disease area. To exclude them is to send a quiet but unmistakable message: that patients are still seen as subjects, not partners.
Malaysia Risks Falling Behind
Around the world, patient involvement is no longer aspirational — it is already standard. Funders demand evidence of it. Researchers embed it into protocols. Patient input is built into ethics reviews.
Malaysia, however, remains hesitant. And every year this continues, we risk falling further behind. Falling behind does not simply mean “different pace” – it means losing credibility with international research networks, and missing opportunities to join collaborative projects that demand strong patient engagement as a condition.
This lack of inclusion is one reason Asia is often less prioritised for global health collaborations. Many international funders, including those from Europe and North America, are reluctant to invest where patient involvement is seen as weak or tokenistic.
Malaysia, in particular, risks being at the lowest point of outreach — overlooked not because of lack of talent or science, but because of an outdated mindset that sidelines patients.
Our research may look strong on paper, but without patient involvement, it risks being detached from lived reality — elegant data with little impact on the ground, and limited appeal to international partners.
A Call For Inclusion
The solution is not complex. Start small: invite patient organisations to multidisciplinary research forums. Give them a panel slot. Ask them to comment on what outcomes matter. Allow them to share how policies and studies land in real life.
Science will not suffer. In fact, it will grow stronger. Research becomes more credible, more relevant, and more trusted when it is grounded in lived experience.
Malaysia needs to change. Our clinical research agenda cannot remain trapped in old assumptions. The world has already moved forward; Malaysia must catch up.
Perhaps the clinical research agenda is complete without patients, but only if research is about publishing papers, not about improving lives.
Saida Abu Bakar is president of the Dystrophic Epidermolysis Bullosa Research Association Malaysia (DEBRA Malaysia), a patient support group for individuals and families affected by the rare skin disease Epidermolysis Bullosa (EB).
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
