New report by the Lung Cancer Education and Advocacy for Patients highlights role of patient advocacy in providing better care for patients
The report, titled Empowering Asian Lung Cancer Advocates, draws on global best practices as well as insights from the Hopeful Voices Patient Advocate Roundtable Meeting, hosted by Lung Cancer Education and Advocacy for Patients (LEAP) and the Lung Cancer Consortium Singapore (LCCS) in late 2023.
During roundtable discussions attended by lung cancer patients and their families, several key priorities in the lung cancer care continuum were identified:
1. Increasing the influence of patient advocates in decision-making and healthcare service development
2. Improving early-stage lung cancer diagnoses by raising awareness or improving access to early screening.
3. Improving access to innovative treatments and diagnostics.
Lung cancer remains the most frequently diagnosed cancer worldwide, representing about 12.4% of all cases in 2022. It is the primary cause of cancer-related deaths globally, with over 1.8 million fatalities annually[1]. In Singapore, it is the third most common cancer and leading cause of cancer deaths[2]. With ageing populations in Asia, more people are expected to be diagnosed with cancer. Inevitably, they and their caregivers, as well as their healthcare teams may encounter challenges across the cancer care continuum, including education, screening, diagnosis, treatment, survivorship, rehabilitation, and end-of-life care[3].
Dr Teh Yi Lin, Medical Oncologist and Lead for LEAP said, "Robust support services, such as medical treatment support, psychosocial care, and educational resources, are essential to ensure that lung cancer patients and their loved ones are well-informed and supported. Patient advocates play a pivotal role in helping to ensure that there is effective support for those affected by cancer."
The white paper outlines actionable recommendations for patient advocacy groups to address the issued identified and enhance lung cancer advocacy in Singapore. They include:
1. Enhancing patient advocacy for better cancer care
- Foster empowered communities: Build and support communities that provide evidence-based information, psychosocial support, and financial guidance to help patients and families manage the complexities of their cancer journey
- Utilise social networks and media platforms for engagement: Develop and leverage social media and traditional media platforms to connect patients and advocates, enabling them to share experiences, personal stories and advice to raise public awareness.
- Integrate patient insights in research: Collaborate with researchers to integrate patient needs and perspectives in clinical trials and studies
- Advocacy training and mentorship: Offer training and mentorship programs to equip individuals with the skills needed for effective advocacy
- Increase public awareness and participation: Implement broad education campaigns and community outreach to increase awareness of lung cancer risks and the benefits of early screening.
- Policy advocacy for screening access: Establish strong partnerships between patient advocacy groups, scientists, and policy-makers to keep up-to-date with the latest scientific findings on the importance of lung cancer screening.
- Raise public awareness and educate patients: Collaborate with healthcare professionals to inform patients about the availability of new treatments and companion diagnostic tests to improve early detection and diagnosis.
- Lower financial barriers: Work towards ensuring access to treatments and diagnostic tests and reducing the financial burden on patients.
- Facilitate clinical trial participation: Increase public and patient education on the benefits of participating in clinical trials.
Hashtag: #LEAP #lungcancer #patientadvocacy
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About LEAP
Lung Cancer Education and Advocacy for Patients (LEAP) was established in 2019 with the aim of advancing lung cancer care in partnership with patients, their caregivers, and the wider community. LEAP promotes lung cancer awareness to patients and the public through regular educational activities and campaigns. LEAP also provides individualised navigational support to newly diagnosed patients to help mitigate the challenges of a lung cancer diagnosis. LEAP has also set up a Patient Advocate Council, providing opportunities for advocates to share their valuable lived experiences with the aim of shaping future policy-making in Singapore and in the region.
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