Over the next two months, we will be hosting a series of three workshops on “Using Data to Amplify the Patient Voice”. In this series, we will look at the power and importance of data, and how it can be used to better support our patients and to amplify the patient voice.
In Part 1, we will hear from Richard Vines, Chief Executive of Rare Cancers Australia about:
- Why is it important for patient organisations to be evidence-based (using data) in our work?
- What are our stakeholders and key decision makers looking for when it comes to data?
- How can we use data to support our work?
We will also hear from fellow patient organisations, ‘Society for Cancer Advocacy and Awareness Kuching’ (SCAN) from Malaysia and Singapore Cancer Society about how data generation and analysis has supported their work.
It will be a great opportunity to understand the power of data and how it can be used to support your cause.
In 2012, Richard and his wife Kate established Rare Cancers Australia (RCA), a patient advocacy group, whose mission is to improve the lives and health outcomes for rare cancer patients.
Since the formation of RCA, the organisation has become recognised as a key participant in the broader cancer, and patient organisation community.
RCA has published research on the state of rare and less common cancers through the “Just a little more time” reports, actively advocated for policy reform around research and treatment for rare cancers, and provided substantial and innovative support to Australian patients and families living with rare and less common cancers.
Richard is the Chair and Chief Executive of RCA, and Chairs many other health alliances and advisory boards. He is a highly sought-after spokesperson for cancer patient advocacy issues.
Melissa has received a scholarship from the Malaysia Government to pursue her studies in Pharmacy at the University of South Australia (UniSA), obtained he Masters of Science by Research at Swinburne University of Technology (Sarawak Campus) and PhD in Medical Science at Okayama University, Japan.
Her professional interest includes cancer therapy, theranostics, nanoparticles, pharmacogenetics and cancer diagnosis. She is currently a University Lecturer at the University of Malaysia Sarawak (UNIMAS) and is a Young Leader 2021/2022 of the Union of International Cancer Control. She was a senior pharmacist at the Ministry of Health Malaysia for over 13 years.
Throughout her career, she was involved in numerous Industry Sponsored Research (ISR) and Investigator Initiated Research (IIR). She also contributes in several non-governmental organisations (NGOs) such as the Society for Cancer Advocacy and Awareness Kuching (SCAN), Sarawak Breast Cancer Support Group, and New Century Lions Club of Kuching Emerald.
Mark is a registered social worker with Singapore Association of Social Worker. He has been working in the nonprofit sector for the past 12 years, including 8 years of direct work (focusing on older adults) and 4 years of non-profit management. He holds a Masters in Applied Gerontology & Bachelor of Social Work (Hons).
At Singapore Cancer Society (SCS), he was instrumental in development of strategic cancer support services, notable key projects include enhancement of the SCS-Return-to-Work programme and SCS Prostate Cancer Survivorship Programme.
This workshop will be delivered in English with simultaneous interpretation into Mandarin Chinese, Japanese and Korean.