Navigating Chronic Illness: Bridging the Gaps in Patient Support Systems 

- Profile -

Nirmala Bhoo-Pathy is a public health physician and epidemiologist with a distinguished career dedicated to advancing cancer care systems and improving life after cancer. Her research and policy advocacy support evidence-based strategies to bridge critical gaps in cancer care, particularly across low- and middle-income countries, where her work has driven meaningful change. In addition to her impactful research, Professor Nirmala is deeply committed to medical education. As an educator, she inspires undergraduate medical students and postgraduate students to view public health as a transformative discipline that extends beyond illness, fostering solutions that enhance the health and well-being of entire populations. She serves as the Coordinator of the Master of Public Health program at Universiti Malaya, shaping the next generation of public health leaders. Her leadership also led to the development and successful implementation of the Master of Epidemiology program in Universiti Malaya, further demonstrating her dedication to capacity-building in the field.

(1) Introduction to the lecture

Norie KAWAHARA, lecture series moderator, noted that the previous week’s lecture had included a powerful and essential discussion for anyone seeking to understand well-being in the Asian context. She noted that following on from the previous week, this lecture would once again be provided by Prof. Nirmala BHOO-PATHY. 

The 2025 lecture series explores one central question: “What does true well-being mean for people in Asia?" In the first session, consideration was given to how cancer can reveal our underlying values—and how medicine reflects society and culture.

In the second lecture, students explored well-being through health beliefs and everyday life across Asian contexts. 

The third lecture focused on Japan’s policy innovations in response to population aging and how these can contribute to global health. 

In the fourth lecture in the previous week, students examined how to assess the social and economic value of healthcare interventions. 

Today’s lecture represents the next step: How can we translate these values and findings into policy—and truly change society? In Malaysia, rapid economic growth has brought major shifts in disease patterns, including a steady rise in cancer cases, even as life expectancy continues to increase. 

This presents a crucial policy challenge, namely how can we build a society where everyone can live healthily, even with limited resources?

Dr. Kawahara noted that through this lecture, students will explore how countries across Asia can work together—across borders and across disciplines—to create inclusive health systems that truly leave no one behind.

(2) Navigating Chronic Illness: Bridging the Gaps in Patient Support Systems

Prof. Bhoo-Pathy noted that in her previous lecture she had talked about financial toxicity and how it affects patients and what sort of impact it creates, not just for individuals who are diagnosed with the disease, but also at the family level. She stated that this lecture would look at the entire ecosystem and the challenges that patients face when they are diagnosed with cancer

Learning objectives for the lecture were defined thus: 1) understand the gaps in chronic illness care; 2) understand patient and financial navigation; 3) review WHO and global models in patient navigation; and 4) explore Malaysia’s experience and insights. 

In terms of the gas in chronic illness care, when a diagnosis is received it can be very daunting and overwhelming for the entire family. Not only will patients be confused, having just received a diagnosis of a severe life-limiting illness, they will also face many challenges, not least of which is understanding the nature of their illness and the prognosis. 

Patients will also need to determine how to deal with their social life, and navigate the pathway to getting better care in the course of dealing with oncology clinics and pharmacies, etc. (Fig. 1)

Patients may have other symptoms, meaning that they may end up being seen in other specialty clinics. In addition, patients may get referrals to go to hospitals or emergency departments depending on the symptoms that they present with. Patients will also call their insurance companies to ask about bills and how they go about getting treated. The entire process if very confusing. 

Even at a single hospital, patients may be required to go to multiple diagnostic and imaging departments within the hospital. This compounds the confusion and it is further exacerbated where there is fragmented and uncoordinated care. For example, if a patient is being diagnosed and is given an appointment to see his or her doctor on one day and then go for blood investigations and other investigations on another day, and also given a schedule to go for imaging such as MRI or a scan on another day, it makes life very difficult for the patient, having to respond to multiple appointments. Sometimes medical records may be lost, which further complicates the situation. This fragmentation of care is a burden for the patient, in addition to the financial burden they may be experiencing, which ultimately leads to worse quality of care and health outcomes. This burden makes patients feel overwhelmed and they may desire to delay or skip care, or not return to the caregiving site. 

Fragmentation of care can also lead to medical errors, which result in worse quality of life for patients and families. Fragmentation also negatively affects patients because it exacerbates financial harm to patients, who are having to take time off work to visit hospital on numerous occasions. The excessive time spent at hospital can also be detrimental to social relationships. People may ultimately lose trust in the system, growing suspicious of the healthcare and suffering from stress and worry.

This sort of scenario is not unusual in low and middle-income countries, and may also impact pockets of populations in high-income countries. 

In the above-mentioned situations, a patient navigator is a key person in the process. The National Cancer Institute of the U.S. defines a patient navigator as a person who helps guide a patient through the healthcare system. This includes help going through the screening for diagnosis, treatment, or follow up of a medical condition such as cancer. A patient navigator helps patients communicate with their healthcare providers so that they get the information they need to make decisions about their healthcare. Patient navigators may also help patients set up appointments for doctor visits and medical tests and get financial, legal and social support. They may also work with insurance companies. They may also work with employers, case managers, social referral lawyers and others who may have an effect on patient's healthcare needs.

There is a great deal of scope in the job of a patient navigator, but what they can do depends on the resources that are available.

So, how does patient navigation fit into the complex scenario of fragmented care? When a patient is referred to navigation, individualized plans are drawn up, depending on patient needs. A trained navigator will have knowledge of the barriers, the kind of resources that are best suited to the patient, including community-based resources, as well as those in the clinical context. 

With this sort of patient navigation, the patient that is affected and their family get timely care, which serves to reduce overall burden on the families and well as the patients, and also improve satisfaction and ultimately improve equity.

In terms of the domains addressed by patient navigation, these include individual-level barriers, contextual-level barriers, timely access to healthcare services, emotional support, developing context-specific solutions, and realization of treatment or diagnostic endpoints (Fig. 2). 

The key steps for defining and incorporating implementation within patient navigation interventions are as follows. First of all, there must be an assessment to identify the intervention that is needed, usually based on local, regional, and international contexts. There is also a need to engage all relevant stakeholders and partners to co-create the intervention. Within patient navigation, there may be different kinds of services, within different domains. That means that a patient navigator can give different kinds of services, which are all deemed as intervention because ideally if we want to develop a patient navigation program, we must make sure that the services that are incorporated into patient navigation are evidence-based. The other key steps for defining and incorporating implementation strategies are to adapt and pilot the intervention in a local setting and to evaluate the implementation of the intervention. Some services that work in a Western setting may need to be tailored to the cultural and customary realities of the Asian setting. 

For the purposes of this lecture, let us take a look at a WHO patient navigation model, aligned with the Global Breast Cancer Initiative (GBCI) pillars (Fig. 3).

One of the things that the GBCI has really focused on is patient navigation. The GBCI has three pillars, as shown in the figure above. Pillar one focuses on early detection of breast cancer. Pillar two talks about timely diagnosis, and pillar three focuses on treatment and follow up of breast cancer. 

Patient navigation directly correlates with these GBCI pillars. In pillar one, the navigation focus that has been put in the framework is to improve participation in screening among the general public.

When a patient navigator tries to focus on pillar two, the navigation focus is to reduce diagnostic delays. 

For the third pillar the navigation focus is to support adherence and reduce abandonment of treatment. 

The above figure and explanation make it clear that a patient navigator is not just one single person, but rather a concept. Different navigators intervene in different parts of the cancer journey and can also be located in different locations. 

It is useful to take a look at the WHO resources on this topic, which can be found on the WHO website, specifically a patient navigation framework.

(3) Global case studies on patient navigation

For the purposes of the lecture today the example of breast cancer is being used as an example, because there is a clearly laid-out framework for patient navigation in this area. This framework makes it easy to explain and make people understand the concepts involved. 

In the first case study, in India, which is focused on pillar one (early detection) of the GBCI, female community health workers and nurses were trained to provide breast health education and conduct clinical breast examination. In terms of the outcome, more than 100,000 women were educated and of these almost 50% underwent clinical breast examination. Adherence to follow up improved from 14% to 40%, a significant improvement. In addition, time to diagnostic biopsy was reduced from 37 to nine days, and 72% of the diagnosed cases were early stage cancers. This demonstrated that this kind of community-based navigation improves early diagnosis. However, it is important to ensure the sustainability of programs, and ensure sufficient funding. 

The second case study, in Mexico, focused on pillar two (timely diagnosis) of GBCI. The patient navigation program “Alerta Rosa” triaged women by urgency, expediting imaging and consultations, which was another model of patient navigation. The outcomes were that median time to evaluation improved to between four and seven days. 72% of women were diagnosed in the early stages of breast cancer and there was very high sensitivity for cancer detection among the red or yellow groups, meaning that a person who is very highly likely to be labeled as having breast cancer is moved very fast through the system. The implication is that triage-based navigation reduced delays, but diagnostic infrastructure and personnel support were deemed critical, and barriers may still persist in under-resourced systems. 

The third case study, from Malaysia, focused on the third pillar (treatment adherence). In this case, patient navigators were integrated into three state hospitals, using nurse and community navigators in the community. This means that the patients can be managed directly in the community. The outcome of this initiative was that treatment default rates reduced from 13% to 2%, with navigators provide support along the care continuum, including home visits and psychological support. The implication of this study was that navigation improved adherence, but success depended on dedicated space, trained personnel and ongoing support from Ministry of Health and NGOs. However, financial sustainability and expansion to more hospitals remain key challenges. 

The key takeaway from patient navigation in Malaysia is that financial and logistic issues were among the top three patient reported barriers. The study showed that while navigation improves care delivery, financial challenges persist and must be addressed to ensure equitable cancer care.

In terms of the financial burdens on Malaysians with cancer, studies show that at one year post-diagnosis, 51% of patients experienced financial catastrophe (defined as out-of-pocket costs greater than 30% of total annual household income). In addition, 33% of households subsequently fell below the poverty line after accounting for cancer-related expenses. 47% of families reported difficulties in meeting necessary household payments. In addition, non-medical expenses, such as transportation and accommodation, significantly contributed to financial toxicity, particularly in public hospitals. 

(4) Financial toxicity and financial navigation

Financial toxicity represents the economic and psychological strain experienced by patients due to costs related to cancer care and its sequelae (Fig. 4).

As introduced in the previous week’s lecture, the ASEAN Costs in Oncology (ACTION) prospective cohort study involving 9,513 cancer-stricken households in Southeast, found that in lower-income countries the incidence of catastrophic health expenditure among patients with cancer can be as high as 74.4%. In the case of Malaysia, one in two households affected by cancer experience financial catastrophe one year after cancer diagnosis. Non-medical costs are also significant drivers of financial catastrophe. Families are forced to dip into savings intended for other purposes, such as children’s education, for example. 

  In order to deal with the challenges of financial toxicity, a financial navigator can provide help and support. A financial navigator is defined by the National Cancer Institute of the U.S. as a person who works with patients and their families to help them reduce stress or hardship related to the cause of treatment for medical conditions such as cancer. Financial navigators help patients understand their out-of-pocket expenses and what their health insurance plans may cover. Financial navigators may also help patients set up payment plans, find cost saving methods for treatment, and improve access to healthcare services that the patient needs. 

The common theme between patient navigation and financial navigation is similar: to improve access to healthcare services and improve outcomes. Financial navigation, however, is very much focused on improving the financial wellbeing of patients.

  A study conducted in Malaysia involved more than 20 focus group discussions, in which patients were asked about the financial challenges that they had faced. Only when it is known what patients need is it possible to develop services to fit needs. 

The study showed that patients were facing: 1) high out-of-pocket expenses, including uncovered essentials (mastectomy bras, stoma gas, diapers, etc.), 2) inadequate insurance coverage, compounded by poor awareness of claims and entitlements, 3) rising medical costs, including for expensive novel cancer drugs, and 4) loss of income, caused by reduced earnings from work. 

The above study demonstrated that there is a disconnect between patients and financial resources, but there are also financial resources which are available in Malaysia, including charitable programs and pharmaceutical assistance programs, etc. The challenge is that patients are very often unaware of such programs or they are not aware that they are eligible. Healthcare providers are often too busy with their clinical work to discuss financial matters. A further challenge is that even when resources are available, the paperwork involved can be overwhelming. This is why financial navigation is so important. 

Dr. Bhoo-Pathy noted that her team formulated a framework for financial navigation in chronic illness care (Fig. 5).

While some of the stakeholders described in the figure above may not be offering money, they may be offering services that can help address the financial problems of patients. The challenge for financial navigation is to connect patients and their households to stakeholders. In Malaysia a financial navigation program is being initiated where trained volunteers from cancer NGOs are to be called on to act as financial navigators. They will be encouraged to work with cancer survivors to help them assess the financial situation of the household, and plan the budget according to the cancer costs that a person is expecting to have to spend. They may also be able to connect cancer survivors with cancer patients as another means of providing support to identify appropriate financial resources. Another hope for this framework is that it can help people continue in their employment, or find a new job after cancer treatment is concluded. 

  While financial navigation is extremely important it is essential to develop a financial navigation framework that is suited to the realities of a particular country, its systems and people. That is why Malaysia embarked on the development of its own financial navigation system (Fig. 6). 

The Malaysia financial navigation program has four phases: 1) Needs assessment and program design, 2) development of financial services, 3) program implementation and financial testing, and 4) monitoring, evaluation and scale-up.

   The entire process of developing the financial navigation program in Malaysia is very much based on the implementation science framework. Implementation science means that when bringing in an intervention from an external source and you want to implement it in your country, you need to consider how to design it, implement it, measure output, and evaluated effectiveness.  

In terms of the future challenges of the financial navigation program implementation, but key points to consider are: 1) healthcare system constraints, 2) cultural barriers and stigma, 3) inconsistent availability of financial aid and support services, and 4) variability in patient needs. 

The anticipated impact and deliverables of the financial navigation program can be summarized as: 1) Personalized financial assistance, 2) reduction of financial burden, 3) improvement in treatment adherence and other patient outcomes, and 4) reduction in workload of healthcare professionals. 

In summary, the proposed methodology set out in today’s lecture offers a comprehensive, adaptable approach to building and scaling a financial navigation program. With strong stakeholder engagement, continuous improvement, and a pragmatic approach for LMICs, the program can address financial distress arising from cancer.

(5) Assignment to students

Prof. Bhoo-Pathy presented students with the following assignment:

Japan has universal health coverage (UHC) and established co-payment and subsidy mechanisms. In contrast, countries like Malaysia or the United States have different health financing structures, where patients may face high out-of-pocket costs or lack of coverage.

The assignment for students was to reflect on the following:

1. How do the needs and roles of patient navigators or financial navigators differ in Japan compared to Malaysia or the United States?
2. Are there unique barriers in Japan (e.g. aging population, care fragmentation, cultural attitudes) that require a Japan-specific navigation approach?
3. What kinds of support or system improvements would make patient navigators/financial navigators more effective in Japan?

(6) Discussion

A student noted that Malaysia’s patient navigation programs have improved treatment adherence and reduced default rates, especially in urban hospitals. While these numbers are impressive, they might not show the patients will never make it to these programs in the first place. The data says that rural, low income or less connected patients might still be invisible. How can Malaysia’s patient navigation program be structured to ensure they don’t inadvertently worsen disparities by mostly serving those who already have some access while neglecting the most marginalized.

Prof. Bhoo-Pathy responded that the first patient navigation program began in Klang, an urban area, serving a predominantly low-income population. Since then more programs have been started, serving more low-income populations. There are also navigators in the community. The bigger challenge is to ensure sustainability and ensure that navigation can be provide to the entire population. This requires multiple models of patient navigation, formulated by various stakeholders. It is hoped that through this approach, diverse models can devised that will respond to needs of distinct communities and groups. That is one way to reduce disparities and increase equity going forward. 

Dr. Kawahara noted that today’s lecture had helped students understand that patient navigation is not just about helping individuals—it reflects deeper structural issues within the health system. Seeing how this plays out in the Malaysian context made it very real and vivid. She noted that the phrase ‘financial toxicity’ captures not just economic hardship, but also the emotional and systemic weight that patients carry. What had struck Dr. Kawahara most is the gap between knowing what treatment is needed, and actually getting to that treatment. Today’s lecture had made that gap very tangible. Dr. Kawahara asked what Prof. Bhoo-Pathy saw as the main obstacles to effective knowledge sharing in Malaysia’s healthcare context today. 

Prof. Bhoo-Pathy responded that the one of the biggest hurdles being faced is the support coming through the system. Navigation is developed through a bottom-up approach, including patients and NGOs, but these are efforts that are not sufficient unless the system steps up to support them, and adopt them as national services. Financial navigation needs to be perceived as a core service that needs to be provided to all patients who need it. That is where the gap currently exists. It is important to examine the pathways that would enable the government to establish jobs for patient and financial navigators. 

A student asked about interest among patients in financial navigator intervention, and how to identify individuals who need navigation. 

Prof. Bhoo-Pathy responded that offering financial navigation requires screening. One of the tools to implement such screening is the COST (Comprehensive Score for Financial Toxicity) score. This is a brief questionnaire with only 11 items and the resulting score is the benchmark by which patients are identified for financial navigation services. 

Dr. Kawahara asked for a few words of advice to students about their final assignment, which will be to write a short policy brief to the NCDs Summit in Malaysia in September. 

Prof. Bhoo-Pathy responded that one of the most important things when writing a policy brief is to remember that the people who are reading it are not scientifically trained. Wording and messaging therefore need to be clear and accessible to non-scientific people, avoiding jargon and specialist vocabulary. When communicating with a non-scientific audience the first thing to decide is a single communication objective—what it is that you want to convey?  It is also important to pick an area that is of interest and a high priority for the setting. A strong evidence base is also essential. 

As the readers of such briefs will be policy makers it is important to keep any brief short and to the point. 

It may even be useful to write a preamble highlighting the experience of a single patient, which set’s the scene for the broader issues and challenges that need to be addressed. 

A final word of advice is to try to be disruptive with any policy brief. 

Dr. Kawahara thanked Prof. Bhoo-Pathy for her lecture, noting that the lecture had demonstrated that while the country or system may differ, the core struggles that patients face—like access, affordability, or fear—are surprisingly universal. And how a society responds to those struggles reveals its true values.