Jane Tsai, Deputy CEO of the Formosa Cancer Foundation discusses the role of patient advocacy groups in promoting holistic care for breast cancer patients in Taiwan.
- You first started out as a volunteer for the Formosa Cancer Foundation (FCF) in 1997, what has kept you working so passionately for so long?
That’s right, I started out almost 25 years ago as a volunteer. Since then, I’ve been drawn to the work that we do and find it so fulfilling to provide support for patients. I find fulfilment in working with our stakeholders - government agencies, schools, and private organisations who are all committed to empowering the general public to live healthier lives through accessible and evidence-based cancer information.
- What impact and role do you see Patient Advocacy Groups (PAGs) like the Formosa Cancer Foundation (FCF) having on patients and the healthcare ecosystem in Taiwan?Engaging patients through public education is vital to the uptake of early detection and screening programs. This ultimately increases the treatment options available to patients as well.
The Foundation was established in 1997 in response to the growing cancer crisis in Taiwan, and to reduce the cancer incidence and mortality rates, We partnered with the government agencies to launch cancer awareness campaigns to educate the general public on the importance of screening and to also support patients through their journey, pre and post treatment.
Many healthcare professionals, social workers and caregivers are needed to support patients with cancer. This is often an aspect that many are unaware of.
Our Foundation’s professional team including the oncologists, oncology nurses, dieticians, psychologists, social workers, and private insurance consultants provide personal counseling and guidance to improve recovery, quality of life, and reduce incidence of disease recurrence. In the case of breast cancer for example, even though the breast cancer screening is free of charge, the screening rate was around 40% in 2019, then dropped to 32.9% due to COVID-19 pandemic. The incidence of breast cancer remains the top one for the past 8 years in Taiwan (82.1/100k population).1 We still have a lot to do.
- What are the biggest challenges to improve care for patients when it comes to breast cancer?One vital aspect is our collective mindset on how we approach health. The government in Taiwan has invested heavily in building a world-class health system, but our national healthcare expenditure is ~6.1% as a share of GDP, lower comparative to other Asian countries like Korea and Japan.2 This is the same for our national health insurance schemes. I think the value of these programs, and how we say we value health is not reflected in the budget-driven decision today, and that needs to change.
Improving diagnostic capabilities and innovation is vital to determine the most effective treatment pathway for patients. Without this, outcomes can be severely affected. Governments need to invest more resources to improve access to the latest innovations in cancer diagnostics and treatments equitably.
- What do you think needs to be done improve the quality of care?It’s time we think of patients as unique individuals and provide holistic care for patients as we consider how cancer affects a person in every way - body, mind, and soul. In Taiwan, about 9% of breast cancer patients are diagnosed under the age of 40.1 The impact on their physical, psychological and emotional toll is much greater than we can fathom. To take care of the young breast cancer survivors, we need to consider issues including fertility preservation, child care, returning to work, changes in body image leading to need for breast reconstruction, and financial pressure on patients and their families.
Screening for breast cancer is accessible in Taiwan - it is free and hospitals are relatively accessible. But for the working woman, many factors can make it difficult to go for screening, and if detected with breast cancer, solely focus on her health and recovery. Insights from a recent survey conducted by Roche Diagnostics with close to 3,300 women across 8 countries in Asia Pacific show that grappling with the ‘double-shift’ of a full-time career and homecare duties, 62% of women identify lack of time as one of the barriers to taking care of their health.4
With commitments they have - as a mother, wife, and employee - their health often isn’t a priority.
One thing we encourage is for employers to have free screening days for women. Quality of healthcare in Taiwan is actually quite good, but where patients need support is outside the hospital. In this way PAGs play a vital role to represent the patient voice in calling for more equitable healthcare.
We then need to create a system where the patient joins in the co-decision making to decide what option is best for them through this journey. Healthcare professionals need to explain both the benefits and the risk of all options and involve the patient in making these choices. Healthcare professionals have to listen to the patients’ voices and respect their decisions, then they can deliver the true value of cancer care to meet patients’ needs.
- What impact and role do you see Patient Advocacy Groups (PAGs) like the Formosa Cancer Foundation (FCF) having on patients and the healthcare ecosystem in Taiwan?
- Taiwan Cancer Registry Center (2020).
- The Department of Statistics, Ministry of Health and Welfare, Taiwan and OECD Health Statistics (2020).
- Roche Diagnostics Asia Pacific. (2023). Freedom To Be #Every Woman Survey.