Patients and their healthcare practitioners (HCPs) must see each other as partners to improve healthcare design and delivery, but increasing treatment costs remain a concern.
In Northern America, Europe and Australia, the Patient and Family Advisory Council (PFAC) has become a model for systematic patient engagement and patient- and family-centric care. It has also been recognised as a method of improving patient experience and patient safety.
According to a 2018 report on PFACs in New York State hospitals, hospitals with high-functioning PFACs reported better patient satisfaction scores and lower rates of septic shock, sepsis, 30-day hospital readmissions and pressure ulcers, compared to hospitals with low-functioning PFACs.
PFACs enable patients and their family caregivers to share their lived experience managing their conditions with healthcare providers (HCPs). This could potentially help HCPs find solutions for patients’ problems by reframing and approaching them in ways that are not limited by institutional processes and ways of thinking.
Factors shaping patient advocacy in Asia
However, PFACs within or affiliated to a healthcare institution or healthcare system in the Southeast Asia (SEA) remains a new concept.
Part of this could be attributed to culture. In Asia where society is more hierarchical compared to the West, doctors are perceived to have a higher social position than patients, while patients accept their lower social position, and do not think of doctors as partners in their care. If a patient is not well educated, he tends to lack the confidence in championing for his own needs, which could contribute to HCPs being less able to manage the problems communicated by the patient.
There is also strong evidence supporting the link between poverty and lack of patient advocacy. A study conducted in Taiwan demonstrates the link between lower income and poorer health outcomes, implying limitations in accessing resources for patient advocacy among lower income groups.
While disease-based patient advocacy groups (PAGs) have been in existence in SEA, they tend to be independent and not affiliated to healthcare institutions. In Malaysia, there are about 44 registered PAGs while Singapore has about 150, with many more unofficial PAGs led by patient volunteers on social media channels such as Facebook, WhatsApp, and Instagram.
In SEA, PAGs appear to place higher priority on managing high treatment costs compared to HCP-patient engagement.
Healthcare institutions and systems in SEA countries enable patients to pay for treatments in various ways such as through public financing i.e., tax-based funding and social insurance, and private insurance and out-of-pocket payments.
However, despite efforts to achieve universal coverage, ensuring access to health services for lower-income populations remains a critical hurdle. Escalating healthcare costs further compound barriers to seeking care, as do unexpected co-payments and gaps in health insurance coverage. Medicines can make up as much as 60% of total healthcare costs in low- and middle-income countries (LMICs).
High costs are driven by large financial investments undertaken by pharmaceutical companies in time-consuming processes from research and development (R&D) through extensive clinical trials and regulatory approvals. These substantial investments are no guarantee the product will be approved for, and made available to patients, and only 16 to 19% of drugs make the final cut.
In Malaysia, early detection reduces treatment costs
The National Cancer Society of Malaysia (NCSM) has been actively advocating for patients’ rights to timely medical care by raising awareness of early cancer screening. NCSM is a not-for-profit (NPO) tax-exempt charity which has been financed entirely by contributions and donations from the public.
The push for early screening is due to increasing cancer incidence in the country which imposes significant financial strain on the healthcare system and patients. In 2022, around 51,650 new cancer cases were diagnosed, with projections estimating over 66,000 new cases by 2030. Additionally, Malaysia's mortality to incidence ratio of 61% which surpasses that of similar economies, underscores lower survival rates, reflecting challenges in cancer detection and treatment accessibility within the health system.
Roughly one in 10 men and one in nine women will be faced with a cancer diagnosis before turning 75, while 64% of Malaysian cancer cases are detected at the late stages; typically Stage III and IV. This can be attributed to insufficient awareness of cancer signs and symptoms as well as the reluctance to seek medical assistance early, exacerbated by fragmented pathways to diagnosis within the healthcare system.
“Our focus on cancer screening and early detection through downstaging is pivotal not only in saving patients' lives but helping them reduce treatment costs. Timely access to quality and affordable cancer treatment is vital for improving prognosis and survival rates following a diagnosis. Late diagnosis necessitates the use of more costly innovative therapies which could significantly add to the patient's financial burden,” explains Dr Murallitharan Munisamy, Managing Director of NCSM.
Although basic cancer drugs are available in public healthcare institutions, innovative therapies, which can significantly improve survival rates especially for late-stage or rare cancers, are often prohibitively expensive for patients. Recognising their patients' financial challenges, clinicians may hesitate to prescribe optimal treatment plans, heightening the risk of increased morbidity, productivity loss, and premature death from cancer.
"Patients often rely on personal income, savings, or external financial aid to afford their care. Low-income individuals, like those in the B40 group, often depend on government-subsidised public hospitals for their healthcare needs. Despite subsidies, the cost of treatments such as chemotherapy and radiotherapy can still be prohibitively expensive."
This problem is not unique to the low-income group.
"Middle-income earners usually begin treatment such as surgery or chemotherapy in private hospitals, but transition to public facilities when they exceed the limit of their insurance coverage, or for ongoing care. Even high-income individuals can struggle with the costs of continuing long-term follow-up and treatment. These shared difficulties across economic groups emphasise the critical need for sustainable solutions in healthcare accessibility,” adds Dr Murallitharan.
Since 2019, NCSM has supported nearly 2,700,000 Malaysians through various nation-wide programmes, including cancer screening, particularly for breast cancer, cervical cancer and colorectal cancer.
Singapore support group embraces more than skin-deep approach to eczema
Atopic dermatitis, or eczema, differs from cancer in that it necessitates life-long management and care of debilitating symptoms such as pain and severe itch which could lead to decreased work productivity and diminished quality of life.
Affecting one in five children and one in 10 adults in Singapore, it also imposes a considerable financial burden. Eczema is the top skin condition seen at Singapore's National Skin Centre (NSC), with more than 18,000 cases diagnosed in 2017.
Presently, eczema cannot be cured, and the effectiveness of medication in patients varies based on severity of the disease. Mild forms of eczema can be managed with inexpensive moisturisers and low-dose steroid creams, while patients with moderate to severe eczema may need to be prescribed with stronger medication such as calcineurin inhibitors, and more costly innovative therapies such as biologics and Janus Kinase (JAK) inhibitors.
About 40.5% of patients in Singapore suffer from moderate to severe eczema and would benefit from innovative therapies. However, these treatments can cost patients thousands of dollars in out-of-pocket expenses. "To date, topical and oral steroids, which are subsidised by the Ministry of Health (MOH) serve as the first-line of treatment for eczema, but they may not be effective for all patients. There are newer innovative therapies which have demonstrated their efficacy in reducing inflammation and restoring skin barrier function, but these are not subsidised by the government or covered by insurance, so many patients cannot afford them," says Ursula Soh, the founder of the Eczema Support Group Singapore (ESGS).
Ursula established ESGS on Facebook in 2012 when she was struggling with the disease, in the hope that eczema patients would use the platform to connect with and support each other. At the time of writing, ESGS is a volunteer-led organisation not yet registered with Singapore's Registry of Societies. She explains, "Although operating on social media, I made ESGS a closed group from the start to reduce spams by peddlers of therapies which have not been clinically tested."
With over 4,000 active members, ESGS has been working closely with the Agency for Care Effectiveness (ACE) under MOH to advocate for the subsidisation of newer therapeutics through government healthcare funding.
Ursula says, “In addition to reducing the social stigma surrounding eczema through ESGS activities, I hope policymakers will recognise the significant impact of eczema on mental health and productivity, and make treatments more accessible and affordable."
Although independent and not affiliated with any healthcare institution, ESGS appears to resemble the PFAC model in the West in terms of how it sees itself as partnering with HCPs. ESGS has hosted one livestream discussion and two in-person events which featured talks and dialogues with dermatologists in 2023, and hopes to do more of the same in the coming year.
"Our members are not afraid of raising difficult questions to dermatologists at these events, and sharing their concerns about standards of care and availability and affordability of treatments. I believe dermatologists learn more about what patients are going through at such sessions than in a typical consultation at their clinic," she adds.