Just received this email from the Open Medicine Foundation (the fundraising arm of the Open Medicine Institute). When this was being discussed last year, the plan was for PWME, among others, to upload their data to allow a "big data" approach to the disease. Haven't read it myself yet! I've broken it up to make it more readable (it's quite long). The Open Medicine Institute Launched its expanded Healthcare Research Platform today, OpenMedNet. This is the collaborative data platform that will be used to collect medical research data from thousands of patients. The Open Medicine Institute Launches Novel Bioinformatics-Healthcare Research Platform with Support from Leading High-Technology Companies VMware, EMC, Kovarus and HPM Networks PR Newswire MT. VIEW, Calif., July 9, 2014 /PRNewswire/ -- The Open Medicine Institute (OMI), an organization with a mission to improve health care by applying a multi-disciplinary, "big data" approach, today rolled out its novel OpenMedNet platform designed to improve healthcare. This integrated healthcare model represents a new approach that many experts believe will improve the outlook for patients especially those suffering from prevalent but complex diseases such as Autism, Chronic Fatigue Syndrome, Lyme, certain cancers and others that have evaded characterization. In May 2013, the Open Medicine Foundation was awarded a competitive grant from the VMware Foundation that included financial and consulting support for further development of the OpenMedNet system – a novel software platform that incorporates leading-edge technology for the study and clinical management of disease. After the initial planning process, VMware consulted with several other leading technology companies in the Silicon Valley that were interested in joining the build-out effort. As the design phase began, the project included teams of experts from OMI, VMware, EMC and HPM Networks. The goal was to expand the OpenMedNet architecture to develop a data capture and analytic system able to optimize large amounts of information from patients, healthy volunteers, physicians, researchers and caregivers to help diagnose and treat difficult medical conditions. "OMI is extremely grateful for the support of the many contributors to the project, including VMware, EMC and Extreme Networks, and subject matter experts at the VARs, including HPM Networks and Kovarus," said Andreas Kogelnik, MD, PhD, Founder OMI. "What started out as significant recognition from the VMware Foundation, became an incredibly broad project that was overseen to the last detail by a group of highly skilled people collaborating to solve major scientific and technical challenges." Design and Execution The team from HPM deployed and configured servers, switches. VMware team members worked with OMI engineers to install VMware products on OMI's HP servers, aligned data storage to the VMware platform and assisted with the build out of OMI applications within the VMware environment. The combined efforts resulted in improvements in storage capacity and processing speed accelerated by nearly 3 orders of magnitude. The improved system runs as a distributed platform over multiple servers for unprecedented scalability and flexibility, supporting thousands of simultaneous users and aligning a wide range of data from clinical information to patient-entered information, medical imaging, whole genome sequencing and RNA and protein data. The novel data and storage architecture supports longitudinal alignment of individual patient and research data to form a comprehensive, distributed chronology of each participating individual in a "sandbox" where they control how their data is shared. "Through this community project, we saw how talented Silicon Valley engineers from VMware, HPM Networks, Extreme Networks and EMC partnered with the OpenMedNet team members to overcome hurdles together and give the OpenMedNet system a tremendous boost in terms of usability, privacy and performance," said Nicola Acutt, vice president, Global Community Affairs, VMware. A Better Understanding of Lung Cancer – First Application The Open Medicine Institute is pleased to announce its new partnership with the Addario Lung Cancer Medical Institute (ALCMI) and the initiation of two key studies that will be supported by the advanced OpenMedNet platform. In both, the data capture, sharing and analytics will be processed using the newly- debuted system. The first study focuses on inherited lung cancer mutations and the second will characterize genomic markers associated with lung cancer in young people. The recently launched "INHERIT" study includes data optimization and exchange via a patient registry and biobank utilizing the OpenMedNet platform. The upcoming genomics study will include ALCMI research consortium institutions in the United States and Europe and will seek for the first time to identify the genomic profiles associated with unexpected early cancers found in young people. Both studies will combine clinical and genomic data to provide new insights into lung cancer. "OpenMedNet is a flexible and scalable platform that's very easy to configure and deploy," said Steven Young, President and Chief Operating Officer of ALCMI. "This is critical as our trials depend on remote patient participation and comprehensive data collection from a variety of sources. We're pleased to be working with the Open Medicine Institute on two of our latest patient-centric research studies." About OMI: OMI is applying a multi-disciplinary, big data approach to the health care system to advance the understanding of complex diseases and improve patient outcomes. OMI maintains a clinical research facility in Mt. View, next to El Camino Hospital ("the hospital of Silicon Valley"), including clinical space, laboratory draw station and core genomic/biotechnology laboratory, informatics core and physiology laboratory. OMI interacts with a network of like-minded international collaborators: patients, community physicians, academic centers, laboratories, industry and large health systems. OMI has developed and employs a novel technology platform – OpenMedNet – that facilitates information sharing (patient consented and HIPAA compliant) and analysis, optimizing collaboration amongst all participants in the health care continuum. For more information, please visit:www.openmedicineinstitute.org. About Open Medicine Foundation (OMF): The Open Medicine Foundation supports OMI's collaborative medical research to find effective treatments and diagnostic markers for a range of complex diseases – currently focusing on neuro-immune diseases including: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Autism, Chronic Lyme and others. To further its mission, the OMF brings together thought leaders from around the world to brainstorm and participate in targeted initiatives and engages the patient community to take an active role in their health care. The OMF is a 501c(3). For more information, please visit:www.openmedicinefoundation.org. About Kovarus: Kovarus focuses on increasing IT efficiency for their clients by architecting and integrating business-aligned IT solutions. The company's holistic approach to helping customers deliver IT-as-a-Service (ITaaS) focuses on the people, process and technologies for enabling IT management and service delivery. This includes deep expertise in data center technologies, including: virtualization, server, storage, networking and cloud computing. Kovarus enables its customers to dramatically simplify their IT operating model and cost-effectively deliver the resources their organizations need to succeed in today's highly competitive environment. Founded in 2003, Kovarus is headquartered in the San Francisco Bay Area with additional locations in Sacramento, Seattle, and Denver. For more information on Kovarus, please visit: www.kovarus.com About HPM Networks: HPM has recently merged with Cancom, one of the largest independent system houses in Europe, though will continue to be led by its seasoned management team and its shareholders. The merged company will continue to serve customers as a global leader in cloud computing and integrated IT services and solutions for enterprise clients. HPM is the best choice for businesses with substantial and complex technology needs who embrace our values and approach. HPM is trusted over other partners because of its insistence on intelligent planning through education. For more information on HMP Networks, please visit: www.hpmnetworks.com or www.cancom.com. About ALCMI: The Addario Lung Cancer Medical Institute (ALCMI) is a patient-founded, patient-focused 501c(3) non-profit research consortium established in 2008 that directly facilitates basic and clinical research to accelerate the discovery and delivery of advancements to patients. By bringing together a world-class team of scientists and clinicians from over 22 academic and community medical centers in the U.S. and Europe, ALCMI has rapidly established a critical mass of expertise and dedicated research infrastructures linked together through centrally coordinated research. For more information, please visit: www.alcmi.net Note: VMware is a registered trademark of VMware, Inc. in the United States and other jurisdictions. The use of the word "partner" or "partnership" does not imply a legal partnership relationship between VMware and any other company.