Rare Voices Australia (RVA) invites leaders of RVA Partner groups/organisations to attend a webinar on Wednesday, 22 November 2023 from 12pm to 1:30pm (AEDT) about a new flagship research study on preferences for genomic testing.
As the national peak body for Australians living with a rare disease, RVA is working in partnership with researchers, decision-makers, and other consumer representatives on a co-designed research study regarding preferences for genomic testing.
Aim of the research
To explore the priorities and concerns of people impacted by rare diseases when it comes to genomic testing options.
How the results from this research will be used
The results from this study will be used to help develop a policy tool that groups such as the Medical Services Advisory Committee (MSAC) can use when making future public funding decisions about genomic testing (for example, recommending that a new genomic test be added to the Medicare Benefits Schedule).
About the webinar
The purpose of the webinar is for the research team (see the speaker bios below) to engage with the rare disease community via RVA Partner group/organisation leaders to ensure the study is meaningful and designed appropriately for the Australians living with a rare disease, including families and carers, who will ultimately participate in the study. Researchers will share an overview of the study and invite participants to share their feedback on the study design. The webinar will also provide attendees with the opportunities to learn about preference research methods, which will be used in the planned study. A Q&A session will give people the opportunity to ask any questions they may have about this study.
Webinar details
Date: Wednesday, 22 November 2023
Time: 12pm – 1:30pm (AEDT)
Location: Zoom – register via this link
More than one representative from each RVA Partner group/organisation is welcome to attend the webinar. You can also submit any questions you have for the Q&A session ahead of the webinar by emailing: [email protected].
Note: for those unable to attend live, the webinar will be recorded with the option to provide feedback to the research team via email.
Questions
If you have any questions, please contact RVA’s Research and Evaluation Manager, Falak Helwani, on 0448 505 184 or at [email protected].
Speakers
Dr Falak Helwani – Rare Voices Australia: Host and Q&A Moderator
Falak is a former research scientist with a PhD in molecular cell biology from the University of Queensland and postdoctoral experience in hematopoietic stem cell and bone marrow transplant biology at the Mater Medical Research Institute. She has co-authored several publications and has presented her research both in Australia and overseas. Falak paused her research career to care for her daughter who has a rare congenital heart defect and later learned that her youngest son has a rare auto-inflammatory disease. As RVA’s Research and Evaluation Manager, Falak is committed to ensuring that evidenced-based understanding of rare disease drives advocacy and policy reform.
Nicole Millis – Rare Voices Australia
Nicole was appointed Chief Executive Officer of RVA in June 2016. An experienced social worker, she has both personal and professional experience in the rare disease sector. Nicole has engaged in systemic rare disease advocacy since 2008 and has extensive experience regarding access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. In 2023, Nicole accepted a health technology assessment appointment to the Enhanced Consumer Engagement Process Co-design Group as a consumer member. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.
Dr Simon Fifer – Community and Patient Preference Research (CaPPRe)
Dr Simon Fifer is Director of Research at CaPPRe and is on the Advisory committee at Patient Voice Initiative. He is a ‘pracademic’ (practical academic), with a research focus directed at solving real world problems by studying human decision-making using choice-based measurement. In healthcare, this translates to measuring patient preferences and values. Simon has a PhD in Choice modelling from the University of Sydney.
Maya Joshi – Community and Patient Preference Research (CaPPRe)
Maya Joshi is Research Manager at CaPPRe with a background in patient advocacy. Maya is passionate about using preference research to meaningfully integrate patient values into healthcare decision-making – at both an individual and systems level. This includes centring patient voices in treatment discussions with healthcare teams, as well as at a policy level when deciding what treatment options people have access to.
