Get patients’ input on health reforms

Reform should move a health system from where it is now to somewhere better for the people who depend on it.

It is not simply about changing structures, introducing new programmes or asking institutions to work differently.

That is why health reform needs patient partnership. Within one healthcare ecosystem, two realities operate at the same time: the institutional system, which is how healthcare is organised and delivered, and the patient system, which is how healthcare is experienced and navigated.

A pathway can look complete institutionally and still feel fragmented to the person moving through it. Institutions understand policy, professional practice and how services are organised; patients and carers understand what happens when all of that meets real life — where care connects, where it breaks and where responsibility becomes unclear.

Both perspectives are needed if reform is supposed to work outside the meeting room. We often hear that major healthcare reforms take years, sometimes even a generation, before their full impact can be seen.

That may be true, but time should not become the explanation in itself. If change takes that long, the system should understand why — where progress is being held back, where responsibility changes hands and what could have been identified earlier.

The mechanism matters. We would not redesign clinical care without clinical expertise or change healthcare financing without financial and policy expertise.

The same principle should apply to the patient journey. Implementation may take years, but patient partnership should begin on day one. If patients only appear at the end, when the system finally asks whether they benefited, we risk discovering too late what could have been understood much earlier.

Opening reform to patients does not take authority away from institutions. It gives decision-makers a fuller view of the system they are trying to change. You cannot fairly redesign a journey while leaving out the people who actually have to travel through it.

But bringing a patient into the room is not, by itself, patient partnership. Participation, representation and partnership are different things. A person can speak from personal experience without claiming to represent anyone else.

An organisation may nominate someone to carry its position. Representing a wider community is different; there must be clarity about who that community is, what mandate is being carried and how information goes back.

A seat at the table creates participation. A mandate is what creates representation. The same standard should apply across healthcare. A clinician brings clinical expertise but does not automatically represent an entire profession.

A researcher may contribute knowledge without speaking for every researcher. An organisation may have years of experience without representing every group affected by an issue.

There is also no single patient voice. The people needed for healthcare financing may not be the same people needed for digital health, workforce reform, patient safety or access to care.

The stronger approach is to bring the relevant people into the relevant decision while there is still room for their experience to shape how the problem is understood and what success should look like.

Their knowledge should sit alongside professional judgement, research, operational realities and practical constraints.

Partnership does not mean everyone agrees, and it does not mean every recommendation must be accepted. What matters is that the route is visible: input is considered, decisions are made by those with the proper authority, responsibility for implementation is clear, and the people who contributed eventually hear what happened.

Measure. Learn. Respond. Improve. Then report back.

Without that return journey, engagement remains one-way. People share their experience, the meeting ends and the system moves on. A meaningful partnership mechanism should connect lived experience to deliberation, decisions, implementation, outcomes and feedback.

This is also where resilience and leadership come together.

A resilient health system is not only one that keeps operating through workforce shortages, funding pressures, supply disruptions or emergencies; it is one that can adapt without losing the patient journey between institutions.

That requires workforce, financing, infrastructure and technology, but the way reform is led has to evolve too. Leadership needs to look beyond individual organisational boundaries, understand where responsibilities connect and keep accountability visible across the whole journey.

Patients and families should not have to become the coordinators of the health system simply because their care crosses several services. Nor should “people-centred” mean inviting people to comment after the important decisions have already been made.

Patient partnership is not asking patients to take over the roles of policymakers, clinicians or institutions. It is about strengthening reform with something institutions cannot generate on their own: the experience of actually living through the system.

If Malaysia wants reform that is genuinely resilient, patient representation cannot remain an engagement activity sitting at the side. It needs a credible place from the beginning — in understanding what is not working, shaping what “better” should look like, testing whether change works in real life and learning from what happens afterwards.

Reform may take years, even generations, but that makes the mechanism more important, not less. The longer the journey, the more important it is to know that we are solving the right problems with the right people and learning as we go.

We can redesign the aircraft, change the route, strengthen the workforce and improve the technology. But before asking people to board another reform, there is one final test: the passengers are ready — is the system ready for the journey?

Saida Abu Bakar is an independent patient advocate working on patient partnership and health systems.

The views expressed are those of the writer and do not necessarily reflect those of FMT.

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