(by Simone Leyden)
The 16th Annual European Neuroendocrine Tumour Society (ENETs) meeting in Barcelona from the 6th-8th March, brought together over 1500 participants from 59 countries to hear from world leaders on the latest research around the globe.
As current President of the International Neuroendocrine Cancer Alliance (INCA) it was so encouraging to see NET patient involvement entwined throughout the scientific program. Having the opportunity to highlight the global work of INCA to captive audiences over dinner at the IPSEN UK Doctors dinner on the Wednesday night, then presenting to over 700 ENETs delegates on the patient journey at the IPSEN lunchtime satellite symposium where definite highlights.
The feedback from both meetings was overwhelmingly positive and we thank IPSEN for placing the patient story front and centre and encouraging multi-stakeholder collaboration. It was a pleasure to present alongside Dr Simron Singh (Canada), Dr David Cella (USA), Dr Juame Capdevila (Spain) and Wendy Martin (UK) as part of the Satellite symposium with topics that included Patient-reported Challenges and the Impact of Disease: Are We Prepared to Listen?; The Impact of NETs: The Perception Gap between Us; Let Me Tell You About the Patient Journey and Moving Forward Together. Special thanks to Sally, a NET patient from the UK, who so articulately and honestly conveyed the issues that NET patients face.
It was opportune to attend many meetings looking at new clinical trials in NETs and voice an opinion around issues including trial recruitment, funding and originality in research. On Friday morning we had a full house at our INCA showcase where we presented some of the work we are carrying out under our three core pillars of Research, Access and Awareness. With the invitation sent to healthcare professionals around the globe prior to the showcase, we asked for a list of practice changing trials that are currently underway or in development. It was so satisfying to see the UF funded CONTROL NETs trial as one of the top responses and it was even better to have the Principal Investigator Prof Nick Pavlakis and many more Australia investigators on that trial in the room with our global colleagues. We also asked for a list of barriers to research. It seems challenges are universal and include: financial funding/costs/sponsorship; timeframe for the grants too short; bureaucratic / national regulations; individual rather than scientific societies’ initiatives; centralization of patients - issues over travel for study visits; large number of patients are not managed in centres offering trials; limited sites opened for many trials; and access to studies (many studies go to the same academic sites, but many other centres would like to be involved but may not have a track record) to name but a few. It was encouraging that there was agreement that only by working with patient organisations like UF and INCA, will we be able to tackle and overcome some of these barriers together.
Following on from the INCA showcase it was an honour to be an invited ENETs speaker and present on Quality of Life and Patient Involvement in Research on the final morning of the conference. My presentation highlighted the important work that has been done so far in the area of assessing and studying NET patient Quality of Life, and what we hope to achieve in the future. It was such a great opportunity to present one of our big projects from the last year, the PLANET Registry and associated electronic Patient Reported Outcome (ePRO) phone App. With ethics and governance approval in hospitals around the country for both the registry and app, and patient data from Peter MacCallum and Royal North Shore, we are looking forward to working with the incredible PLANET committee and eResearch department at Melbourne University, rolling out the patient app. This will be starting at the above sites over April and May.
At the end of the conference we were more then delighted to be awarded Best Clinical Poster, out of over 300 scientific abstracts, for the INCA Unmet needs in global Neuroendocrine Tumour (NET) care: similarities and differences in perspectives of patients, patient advocates and NET health professionals. Such an incredible achievement and recognition on the importance of this work for the authors who represent patient organisations and medical societies from around the world.
Finally, to end what was an incredibly busy week, it was fantastic to participate in the Global NET Leadership meeting hosted by the ENETs Executive Committee alongside UF board member and APNETs representative Prof Rod Hicks. Among many discussions on further global collaboration, I put forward an update on the Patient Information Pack project that we first discussed in Mallorca last November. Again, it was widely endorsed by each NET medical society leader and we are pushing forward with the timeline and project outcomes in partnership with our INCA members and medical leaders. We look forward to launching stage one of this project in time for World NET Cancer Day on November 10.
Special thanks to UF NET Nurse Kate Wakelin and Project Officer Meredith Cummins for their support at the conference and to all the Australian healthcare professionals from Royal North Shore, Peter MacCallum, Royal Brisbane, Monash, Queen Elizabeth, Fiona Stanley and many more who represent our Australian NET patients so admirably on the global stage.
For more about the conference and to hear from experts including Prof Tim Price (SA), Dr David Ransom (WA) and Dr David Chan (NSW) please visit our facebook page (facebook/unicornfoundation) to listen to a live feed of the lunchtime symposium which was broadcast within the private patient facebook group.
The Unicorn Foundation looks forward to continuing the conversation, projects and collaborations with our partners including ENETs, COMMNETs, INCA and APNETs over the next year and into the 17th annual ENETs in 2020!