Celebrating Cancer Survivors Day: A Patient's Inspiring Journey Towards Genomic Data Digitalisation in Cancer Care

We are excited to share the heart-warming story that inspired the collaborative project between Roche, Icon Group, and Oncoshot kicked off last October to digitise cancer genomic data. During the launch event, we had the privilege of sharing Susan Melia's remarkable journey as a breast cancer patient advocate based in Connecticut, USA. Coincidentally, Susan had just celebrated her 9th year of living well with stage 4 breast cancer.

Susan's story shed light on the urgent need to constantly match clinical and genomic cancer data to the evolving landscape of clinical trials. It was a sentiment echoed by others we engaged with on Twitter back in 2019, offering unique insights that differed from the perspectives of patients, peers, and collaborators in our region.

She emphasised the importance of support to ensure that her mutational and biomarker data were regularly and automatically matched with relevant clinical trials recruiting in nearby states within the US. The goal was to eliminate the need for manual and periodic re-evaluation of the evolving trial landscape, which is an additional burden on patients already dealing with the physical and emotional demands of cancer treatment. This can leave patients feeling exhausted and drained.

Susan also shared the experience of her friend, Liz, battling uterine cancer and undergoing genomic sequencing. Unfortunately, Liz's paper report had been filed away and forgotten after the initial review because it did not list any standard therapies or relevant studies for her NTRK mutation. Tragically, when an NTRK clinical trial option became available later on, neither Liz nor her Oncologist were aware of it, resulting in a missed opportunity to participate at a nearby site. Fortunately, Liz eventually accessed the treatment after FDA approval, leading to a meaningful survival extension.

Susan's story challenged us to address this crucial issue. While the Oncoshot team was unable to tackle the problem of poor genomic data digitalisation and real-time matching back in 2019, the feedback and insights gained from conversations with patients like Susan prompted us to reframe the problem within the context of the cancer ecosystem stakeholders in the Asia Pacific region. This forced us to reimagine the necessary infrastructure to ensure that patients would ultimately benefit from enhanced capabilities at an ecosystem level.

Today, we have taken significant strides by providing digitised genomic data back to physicians, thus bridging a critical data gap that has hindered the value and impact of genomic testing.

We are confident that the element of luck or chance, which played a crucial role in Liz's case, will no longer determine access to treatment and clinical trials for patients undergoing genomic sequencing in the future.

We extend our gratitude to Singapore's collaborative ecosystem and our esteemed partners who have joined forces to improve patient access to clinical trials.

Susan can be found on Twitter. Be sure to follow her inspiring journey.