The doctor didn’t know – and neither did we

Malaysia’s healthcare system is at a turning point.

As the country moves toward an ageing society, coordinating care across hospitals, clinics, states and providers will only become more critical.

Discussions about healthcare reform tend to focus on funding, staff shortages and hospital capacity. But another challenge is catching up: health data governance.

Healthcare governance runs on data. Two types matter most here.

The first is health financing data, which tracks expenditure, government spending, insurance payments and household out-of-pocket costs. Malaysia has made solid progress on this front over several decades, giving policymakers better tools to monitor financing trends and direct resources more effectively.

The second is clinical data – the information contained in medical records. These contain diagnoses, treatment histories, medication use, laboratory results, imaging reports and other details essential to patient care.

Unlike health financing data, however, Malaysia’s medical record infrastructure remains fragmented, and this has real consequences.

Fragmentation of health data

The problem is sharpening as the population ages. Older adults often require long-term treatment for multiple chronic conditions and may move between hospitals and clinics over many years.

I saw this first-hand when I accompanied my mother to a “Peka B40” panel clinic, where she was seeking treatment for a throat infection under the federal government’s subsidised healthcare scheme. This scheme covers medical costs up to RM500 per person per year.

When the doctor asked about the blood pressure medication my mother had been prescribed at a government health clinic, neither of us could remember its name.

It was a small moment, but it pointed to something larger: even where subsidised care is available, continuity of medical information often is limited.

Without integrated health records, care becomes fragmented, repeated and less effective. This is especially the case for patients with complex needs.

That episode is far from unusual. It reflects Malaysia’s fragmented health data landscape.

Some health information is collected centrally. The disease registries under the Mandatory Notification Disease Surveillance system help track infectious diseases. Centralised databases are used for foreign worker health examinations.

These serve real purposes. But they were built for specific uses and do not talk to each other. They are not part of a comprehensive electronic medical record system that can support continuity of care across public hospitals and clinics.

Most public hospitals still depend heavily on paper. The digital systems that do exist tend to be confined to individual facilities and cannot share information across institutions.

By 2025, only a limited number of government hospitals and clinics had implemented clinical information systems. Despite years of talk about healthcare digitalisation, Malaysia still has no fully integrated nationwide electronic medical record system.

Against this backdrop, the federal government’s One Citizen, One Record initiative is an attempt to change that. The Ministry of Health has announced plans for all public hospitals and clinics – about 150 hospitals and over 3,000 clinics – to adopt electronic medical record systems by 2029. If it works, it could be the foundation for a more coordinated, efficient and patient-centred system.

Concerns over a centralised system

The scepticism is understandable, though. When I was doing fieldwork about 15 years ago, the idea of centralised electronic medical records was already on the table.

During debates over the proposed 1Care national health financing initiative back then, policymakers envisioned a centralised health information system that would support not only patient record management. It would also cover healthcare financing, referrals, reimbursements and performance monitoring across both the public and private sectors.

At the time, the proposal generated much controversy.

Some private providers worried about the costs of transitioning to centralised digital infrastructure, including software, hardware, staff training, cybersecurity and long-term maintenance.

Others questioned the governance and procurement arrangements. They feared that politically connected firms could disproportionately benefit from large-scale technology contracts.

Some expressed concern over whether technological solutions alone could address deeper structural challenges within the healthcare system.

Those concerns remain relevant today. Health information systems are not just technology project but also governance projects. Getting them right requires not only code and hardware. They need public trust, institutional accountability, shared data standards, digital literacy and transparent regulatory rules.

Continuity of care

The case for trying, though, has only grown stronger.

A 2023 health white paper rightly highlights the potential of digital technologies and data analytics to improve service delivery, sharpen evidence-based policymaking and deliver better outcomes for patients.

For many in Malaysia, healthcare journeys now span multiple facilities and geographic locations. This is particularly true for older adults.

Researchers studying ageing in Malaysia have noted that some older adults move between states to live with different family members throughout the year. Someone might start treatment in Kuala Lumpur, follow up in Kota Bharu and seek further care elsewhere while visiting relatives.

Without records that travel with them, the doctors treating them are working in the dark – no access to prior diagnoses, medication history and past treatment plans.

The consequences are predictable and costly. Fragmented information increases the likelihood of duplicated tests, delayed treatment, medication errors and higher bills.

Integrated electronic medical records would help, particularly for the chronic conditions that tend to accompany ageing: diabetes, hypertension, cardiovascular disease, dementia and post-stroke rehabilitation.

Evidence from other countries points to one lesson above all: advanced technology alone is not enough. Strong legal safeguards, clear governance structures, public confidence in data protection, and real coordination across levels of government are just as important.

That last point tends to get overlooked. Healthcare is usually viewed as a federal matter because hospitals, healthcare financing and major health programmes are administered nationally. Yet many of the factors that shape health outcomes extend far beyond the healthcare system itself.

Housing, public transport, community services, social welfare programmes and age-friendly environments all affect people’s health and wellbeing. These sit, at least partly, with state and local authorities.

If integrated health data is governed responsibly and protected by proper safeguards, it could extend well beyond clinical care. It could help identify vulnerable groups, coordinate community-based services and strengthen early-intervention programmes at the local level.

Ownership of health data and privacy

Looking further ahead, there is a case for linking healthcare platforms with broader digital public-service platforms. This could include the MySejahtera app, despite all its current limitations.

Done well, it could let individuals securely carry their medical information across healthcare facilities and state lines.

But the point of digital integration should not simply be administrative efficiency. It should also give people more control over their own health information.

Patients should be recognised as the primary owners of their records, with the right to access, manage and securely share them as they see fit.

That kind of trust has to be built through privacy safeguards, transparency, accountability and genuine informed consent – not just a policy announcement.

The governance challenges are real. Centralised digital systems create new risks: data breaches, cyberattacks, ransomware incidents and inaccurate data entry. Health information is among the most sensitive personal data there is. This makes privacy protection and cybersecurity essential in any digitalisation effort.

Then there is the unresolved question of how to include private providers. Building an integrated health information ecosystem will require mechanisms that encourage or require data sharing while balancing commercial interests, patient confidentiality and public interests. That balancing act will not be easy.

But the fundamental question has shifted. It is no longer whether to digitalise health records – that process is already under way.

The real question is whether Malaysia can build a system that people trust, that holds data securely, and that works across different platforms and institutions. Will it also be able to connect federal, state and local governance in a coherent way?

One Citizen, One Record should be understood as more than a technology upgrade. It should also be about governance reform with long-term implications for public health, social protection and healthy ageing.

Whether Malaysia gets this transition right will shape the future of healthcare governance for decades.

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