As an advanced cancer patient who also works for one of the most innovative tech companies on the planet, I live on the edge of a space that is equal parts exhilaration and exhaustion. My heart skips a beat every time I hear of a new life-saving pattern or insight gleaned from the massive amounts of genomic, imaging and clinical data available. It all happens so fast and the collaborative nature of my job allows me to see it happen in real-time. New discoveries burst out of labs and jump into the laps of data scientists. Watching leaders in the biomedical industry use AI to help find new cancer-causing mutations, discover new biomarkers, and predict novel treatment response is an absolute rush.
On the flip side, the healthcare landscape is exhausting. New biomedical insights can greatly advance my care. But often, I feel like Inspector Clouseau trying his best to get into the castle in ‘The Pink Panther Strikes Again‘ as I fall into the moat surrounding the current clinical system. You see, tech and science move exponentially. Healthcare still moves linearly. That disconnect is felt by cancer patients on the leading edge every day. After I was diagnosed with metastatic prostate cancer in 2014, it became my mission to change this.
Genomics is exhibit A. Last year, Zina Moukheiber wrote for Forbes about how working at Intel opened my eyes to the power of genomic sequencing. I was falling head over heels into the moat when what I really needed was this innovation to impact my clinical care. Fortunately, I was able to get access to cancer genomic testing, and it opened new doors for treatments that would have otherwise been closed. But I was very frustrated at the slow adoption of these cutting-edge diagnostics and by guidelines for genetic testing that are old and clunky and haven’t kept up with technology. ‘Evidence standards for clinical utility’ models that payers adhere to are ancient. How in the world can a doctor know what is precisely driving a patient’s disease? The only way to figure that out is to run a comprehensive genomic cancer panel test from companies like Tempus or Foundation Medicine who look at hundreds of genes to see if there’s a match to what is driving the patient’s cancer. Private insurance companies don’t want to cover the cost of these ‘panel’ tests because their medical necessity policies only cover a few specific genes. We have to get beyond the ‘medical necessity requirement’ that payers use to deny coverage for panel tests. Looking at one gene at a time is archaic, and it deprives patients of critical information when they are most vulnerable.
Fortunately for me, Intel embraces stories where acceleration of technology adoption can disrupt the status quo. I started SequenceMe.org to spark a patient-driven movement that would educate cancer patients about the power of genomics. My goal is to empower them to demand cancer genomic sequencing, so they too can fight cancer with data. Only about 15% of advanced cancer patients in the US receive next-generation sequencing that offers the potential to pinpoint the mutations driving a unique individual’s cancer and open new therapeutic doors. Outside of the US it’s even much lower. By the time medical professionals have conversations with patients about these capabilities, it’s too late. Advanced cancer patients need new tools to help propel them into precision medicine, take control and get the insights they deserve.
Putting pressure on the healthcare industry by driving patients to demand genomic sequencing for cancer accelerates adoption of these technologies. This in turn puts more patient genomic data into research settings, which in turn drives new life-saving discoveries. That translates into new drugs and new hope for people like me. Intel and Freethink Media produced a video, Accelerating Precision Medicine with AI, to show these future possibilities of cancer research. It resonated. The video has collectively reached about 10 million people across multiple sites and won the Webby for longform video in 2019.
What’s next? At the HLTH event in Vegas this week, you will see a groundswell of people supporting the cause by wearing SequenceMe shirts (proceeds from shirt sales go to Children’s Cancer Association). If you attended the Intel SOLVE panels on Sunday October 27th, you heard Intel and leaders across the industry drive conversations that address barriers to the adoption of precision medicine. In a panel discussion on Monday, October 28th titled ‘How Do We Fix Healthcare? We Listen to Patients’, I’ll share my insights as a patient who also works as a technology innovator.
I will also highlight a new collaboration with Clear Genetics, a software company that is building technology, including an AI-driven platform, to scale the delivery of genetic and genomic services. Clear Genetics will power the first clinical-grade, HIPAA-compliant chatbot, Gia (Genomic Information Assistant), available at SequenceMe.org. Gia educates cancer patients about the power of genomics, answers their questions, and helps them take the next steps towards improving their outcomes. Co-founded by Moran Snir, a software engineer and mother who is driven to make genomics more accessible, Clear Genetics offers thoughtful solutions to improve patient access to cutting-edge research. Their conversational AI chatbot is powered by Amazon EC2 M5 instances that feature Intel® Xeon® Platinum 8000 series processors. The chat bot will allow patients to instantly schedule telehealth appointments with board-certified genetic counselors, where they can delve into more specific questions and concerns. Not only will this help educate and engage patients in new ways, it will also speed up specimen release consent, fast track authorization to release test results to authorized third parties, and improve accessibility for patients by connecting them with forward-thinking specialists. These thoughtfully designed chatbots from Clear Genetics will bridge existing communication gaps to augment care and increase access to new therapies, and that can’t come soon enough.
Want to learn more and jumpstart your journey into precision medicine for cancer? Visit sequenceme.org/. For more information about how Intel technologies are powering the future of healthcare, visit intel.com/healthcare.