Clinical OMICS

NOV-DEC 2018

Healthcare magazine for research scientists, labs, pathologists, hospitals, cancer centers, physicians and biopharma companies providing news articles, expert interviews and videos about molecular diagnostics in precision medicine

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Page 43 of 51

42 Clinical OMICs November/December 2018 Data Ownership Will Change Health T he concept of consumerism has been slowly making its progress into the healthcare indus- try for the last decade. Millions of DTC genetic tests, wearables and other health related services have tried to connect individuals to their health. There definitely is interest, but what is lacking is how the consumer owns the data. With this thriving consumer engage- ment movement, consumers are more receptive to information, and they want to actively participate in their healthcare treatment, they need to have tools to monitor, track and control their total health. Tech- nology is playing a pivotal role in this paradigm shift with connected health products. There has to be a better way to control and share your data. You must truly own your data. By putting the consumer at the center of healthcare we will unlock better health for all. Empowering people past citizen science will be the future, because the cur- rent model just doesn't work and at some point people are going to wake up and know that they have signed up their most valuable assets to be monetized behind their backs. A new community or company doesn't solve the problem and neither does blockchain. The data owners solve the problem. At the end of the day "Data Ownership" will drive new advancements not only for cures but also for new products and innovation. When we get people involved as partic- ipants with their data—whether it be their DNA, medical records, or wearables—we know good things come from all angles. So why haven't we enabled more people to do good? We've been doing the bad lately. Time for the good to take over and push not just companies, but people to make the right decisions with their health data. ARDY ARIANPOUR Co-Founder and CEO, Seqster A pril 14th, 2003 was the date the Human Genome Proj- ect was officially declared "complete" and on that day the expectations of a medical revolution heightened. In the context of innovation in health, genomics has progressed incredibly quickly but we are still not at the point where we can use a patient's entire genome to diagnose and manage any disease, or to maintain wellness. A myriad of tools, such as PCR and microarrays, have made their way to the clinic but nothing that directly interrogates the full sequence. I believe there is going to be significant change over the next 12 months on many fronts, ranging from increasing competitiveness of long read sequencing to clarity around public payor reimbursement, as well as more guidance from the various regulatory agencies around the globe. The stand-out event for me though is the completion of a project, the Genomics England 100,000 Genomes Project, which will start to address those expectations of the past 15 years. The "system," developed by Genomics England and their part- ners in the project, will be transferred to the NHS for rou- tine clinical use. Genomic medicine will become completely translated from research into a routine clinical service—a huge accomplishment stemming from a bold vision. The details are being ironed out, but in general, the focus will be on rare disease diagnosis and cancer. Why is this so important? This is complete "translation". While many countries are still experimenting, the NHS will be offering a genomic medicine ser- vice that a few years ago seemed impossible. It is great news for the patients in the U.K., but it is also a landmark for other major national systems looking to do the same thing. Many of the big implementation questions will have been answered by Genomics England meaning others can learn and accelerate the translation of genomics in their health delivery systems. Those close to the project will tell you it has been difficult, and they have had their detractors and doubters along the way. However, once the NHS does go "live," this will be seen globally as a landmark event for genomics translation and a point that will tell us all: "it can be done." 100K Genomes Project, Genomics England, NHS Bring Genomic Medicine to Clinical Care DAVID ATKINS CEO, Congenica

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