Singapore's Familial Hypercholesterolemia Programme: A Case Study in Evidence-Based Policy
by Arpita Raja

Research is often said to take up to 17 years to influence policy and practice. While this highlights the challenges of translating evidence into action, it risks suggesting that policymakers simply ignore research. The reality is far more complex. Good evidence is  essential, but evidence alone rarely drives policy change. Health policies are developed in real-world settings shaped by competing priorities, political considerations,  institutional capacities, and public expectations. Policymakers must weigh scientific findings alongside social, cultural, and economic realities, often making decisions under conditions of uncertainty.

This raises an important question: If we have strong evidence, why doesn’t it always lead to policy change?

Across many health systems in Asia, there remains a gap between what we know and what we do. Often referred to as the “know-do gap” (1), the challenge isn’t the absence of evidence but the difficulty of ensuring evidence is relevant, timely, and meaningful to decision-makers. Research findings may arrive after key decisions have already been made, be communicated in highly technical language, or fail to account for local political and social contexts.

Research, Policy, and Implementation Cycle
The Research, Policy, Implementation Cycle

What does this look like practice? A useful example is Singapore’s National Familial Hypercholesterolemia (FH) Genetic Testing Programme, a case study that demonstrates that even  strong evidence must be balanced against the realities of health system implementation, public acceptance, and competing policy priorities.

FH is a relatively common inherited condition that affects the body’s ability to regulate cholesterol levels, with an estimated prevalence of about 1 in 250 people globally. Left untreated, it can increase the risk of early cardiovascular disease by up to 20 times, often without obvious warning signs. In Singapore, several tens of thousands of individuals may have FH, yet many remain undiagnosed until later in life (2).

At first glance, the policy case for action appears straightforward. There is strong evidence that early detection and treatment can improve health outcomes, prevent future heart disease, and reduce long-term healthcare costs. However, translating this evidence into policy was not simply a matter of reviewing the data and launching a programme. Policymakers had to consider whether the health system was ready to support large scale screening and follow-up care. This means thinking through how testing could be integrated into primary care, how patients would move through referral pathways, and whether  sufficient specialist services were available to manage newly identified cases. These decisions also had to be weighed against other pressing national priorities, including diabetes, hypertension, and an ageing population (3).

Beyond operational considerations, there were important social and ethical questions to address. Genetic testing raises concerns around privacy, potential stigma, and the implications of identifying risks that may affect multiple family members. In a diverse and multicultural society such as Singapore, taking these factors into consideration are critical to ensuring public trust and acceptance.

Recognising these realities, the Ministry of Health introduced the programme as part of the Healthier SG strategy. Rather than creating a standalone initiative, the programme was embedded within existing primary care pathways. Individuals identified with elevated cholesterol levels can be referred through structured clinical pathways for further assessment, while family members who may also be at risk can undergo cascade screening. Financing support through subsidies and MediSave further helps to improve affordability and access.

The programme is also supported by partnerships across the healthcare ecosystem. Clinical providers, patient groups and organisations such as the Singapore Heart Foundation and FHCARE play an important role in raising awareness, communicating risk, providing counselling, and helping patients navigate care.

 

FH_Singapore Heart Foundation

Information on the Singapore Health Foundation website on Familial Hypercholesterolemia and the resources Singaporeans can use to find out more

The FH experience offers an important lesson for health policy. Strong clinical and economic evidence provided the foundation for action, but evidence alone was not enough. Success depends on aligning scientific knowledge with health system capacity, governance structures and public acceptance.  In other words, effective policy emerges not only from what the evidence says, but from how well that evidence fits into the social, cultural, and institutional realities in which it will be implemented.

So where do we go from here?

If there is one lesson from health policy, it is that producing evidence is only the beginning. Bridging the “know-do gap” requires more than publishing research findings or communicating them more effectively. The challenge is often not that policymakers lack access to evidence, but that policy decisions are shaped by a complex mix of political priorities, institutional realities, resource constraints, and public expectations.

For research institutions, this presents an important challenge and opportunity. Rather than asking only how to generate better evidence, we should also ask how we can ensure that evidence is relevant, timely, and responsive to the needs of decision-makers. This means understanding the environments in which policies are developed and recognising that evidence must compete with many other considerations.

The implication is clear: evidence is necessary, but rarely sufficient on its own. Whether research influences policy depends on factors such as timing, trust, relationships, and readiness of systems to act on new knowledge. Bridging the gap requires sustained engagement at the research-policy interface, the space where evidence is discussed, interpreted, adapted and translated into practice.

Strengthening the link between evidence generation and health policy action requires sustained engagement across multiple stakeholders. At the SingHealth Duke-NUS Global Health Institute, the Policy Core supports these efforts by fostering connections between researchers, policymakers, healthcare providers, patients and other stakeholders. Policy dialogues, stakeholder consultations, collaborative research partnerships, capacity building programmes and knowledge translation activities, are crucial in creating the opportunities for evidence to be understood within the realities of policy and practice.

Ultimately, narrowing the “know-do” gap is not the responsibility of researchers or policymakers alone. It is a shared endeavour that requires continuous dialogue, mutual understanding, and collaboration across disciplines and sectors. If we want research to improve health outcomes, we must invest not only in generating evidence, but also in the relationships, institutions, and systems that enable evidence to make a difference.

A Health Policy Analysis Workshop organised by the SingHealth Duke-NUS Global Health Institute.


Find out more about Policy, Systems and Implementation at SDGHI.


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References:
1. Donohue JF, Elborn JS, Lansberg P, Javed A, Tesfaye S, Rugo H, et al. Bridging the "Know-Do" Gaps in Five Non-Communicable Diseases Using a Common Framework Driven by Implementation Science. J Healthc Leadersh. 2023;15:103–19.

2. Bakour HA, Hussain Timraz J, Bin Saddiq BW, Alghamdi NA, Irfan Thalib H, Alyarimi M, et al. Familial Hypercholesterolemia: A Comprehensive Review of Advances in Treatment Strategies and the Role of Patient Beliefs. Cureus. 2025;17(1):e78032.

3. Ong S. "Irresponsible Not to Share Such Important Information": A Narrative of Responsibility That Underpins Familial Disclosure of Genetic Risk in Singapore. Bioethics. 2026;40(1):85–93.



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