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Community representatives were very engaged with the presentation

Community and Researcher Engagement, Myeloproliferative Neoplasms, 2022

by Dr Juliana de Castro, CaRE committee member

The Community and Researcher Engagement (CaRE) program from the Central Clinical School at Monash University hosted a hybrid seminar called ‘Myeloproliferative Neoplasms – Towards Precision Medicine’ at the Betty & John Laidlaw Education & Innovation Hub on Thursday, 13 October 2022.

The event was well attended by guests both in person attendees and online via Zoom. Guests included members of the Myeloproliferative Neoplasms (MPN) community, clinicians, researchers and students.

The event was facilitated by Dr Karen Alt, Head at the Australian Centre for Blood Diseases (ACBD) at Monash University and Chair of the CaRE committee, and moderated by Professor Stephen Jane, Dean of the Sub-Faculty of Translational Medicine and Public Health within the Faculty of Medicine, Nursing and Health Sciences at Monash University. The program presented a diverse line up of speakers that included different perspectives and aspects of MPNs and how we are progressing towards precision medicine.

The evening commenced with clinician-researcher Professor Andrew Perkins (pictured, left), who is a renowned world expert in MPNs sharing about his extensive research on diagnostics and how to find the best management plans for patients with MPNs. This was followed by Mr Ken Young who is a dedicated advocate in the MPN community and a community representative of the CaRE committee. Ken has been diagnosed with Polycythaemia Vera in 1998 and he shared his perspective on the importance of involving patients in research and how they can bring unique insights into the design of research projects. We then heard from Ms Charlene Lam about the important findings of her PhD studies at the ACBD that ultimately may lead to the development of improved biomarkers and therapies for MPNs.

Finally, the formal presentation was concluded by Ms Catriona Rafael who is the Manager of Policy and Advocacy for the Leukaemia Foundation. Catriona shared about how the Foundation has been developing guidance on optimal care pathways for blood cancers and also other incredible resources to support patients not just with MPN but also other types of blood cancers. The seminar concluded with a Q&A session facilitated by Professor Stephen Jane, during which online and in person attendees could ask questions of our panellists. This sparked some fruitful and interesting conversation!

The seminar was sponsored by Abbvie and Kartos Therapeutics and for in person attendees was followed by refreshments. This provided a great opportunity for connection between researchers and members of the community. One attendee noted that it was “a well-balanced event with numerous voices” while another thought it was an “excellent educational program” for community members.

The organisers would like to thank the sponsors and the Leukaemia Foundation for supporting this event, the volunteers and also all the members of the community and researchers who attended the event. CaRE program chair reflected “we truly believe that events like this, which allow consumers, researchers and clinicians to have valuable interactions can only be beneficial to the advancement of the field. It empowers the consumers and also brings meaning to the researchers.”

To watch the seminar again and find out more about CaRE, please visit this link: Myeloproliferative neoplasms – towards precision medicine.