Using Big Data to Personalize the Healthcare Experience in Cancer, Genomics and Mobile

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    Welcome. I am delighted you all could join us.

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    Personalized Medicine.

    People have been talking about Personalized Medicine and changing healthcare from

    reactive to proactive for decades.

    Now with rapidly evolving new technology , including cloud computing, computers

    are able to generate, store and analyze large volumes of data.

    There are three main trends in harnessing these large amounts of data or Big Data

    to make leaps into personalizing the Healthcare experience.

    Genomics sequencing and ultimately analyzing the human genome, and the effect

    of the genome on individual diseases

    Cancer/Clinical Trials using EMR/EHR, along with mobile data, pharma data, and a

    number of types of data to look at the bigger picture of an individuals healthMobile Health Smartphones have permeated society, and now they are moving to

    healthcare. Individuals are utilizing smartphones to monitor and improve health

    outside the hospital.

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    First off we have Genomics.

    What is genomics?

    It is the study of the human genome. With the influx in technology, cloud

    computing allows researchers to store and analyze huge sets of data, like thehuman genome.

    The primary focus of current genomics is on sequencing the genome affordably.

    However there are researchers and companies also looking at analyzing the genome

    and applying the information to causes for diseases.

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    The history of genomics research can be traced back to 1956, when Rosalie Franklin,

    Watson, Crick and Wilkins discovered the structure of DNA and recreated the double

    helix model.

    Recently, researchers have used Big Data technology to sequence the human genome

    and better understand the role genomics plays in health and disease.

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    Research in the field of genomics has come a long way in the past 60 years. The most

    significant effort in studying the genome and its effect on disease, was the Human

    Genome Project which changed sequencing form a manual process to an automated

    computer based one, that used the existing technology. Not only was it monumental

    in the study of genomics but also stands as an early example of data sharing between

    public and private entities.

    The project began in 1990, and was completed 13 years later in 2003. Goals of the

    project included: sequencing, storing and improving tools for genome analysis. After

    successfully sequencing the genome the project will transfer the work to the private

    sector.

    The Human Genome project was a project sponsored by the US Department of

    Energy and the NIH. The project developed the technology to identify, analyze, andsequence all 20,000-25,000 genes in human DNA.

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    By the time the Human Genome Project was completed the cost to sequence the

    Human Genome was $40 million, down from $95 million just two years before.

    Academics and companies have been working hard to make sequencing affordable

    and therefore available to the public. Today the Human Genome can be sequenced

    for around $5000 consistently and accurately.

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    Today the cost is around $5000 per genome which is not affordable for the average

    patient. And genomic information can go a long way in personalizing medicine.

    However, it is clear that this is the future of medicine, and I along with many experts

    in the field are predicting that we will reach the $100 genome in the next couple of

    years.

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    Here are some of the companies that are not only working on making sequencing an

    affordable and routine part of healthcare, but also analyzing the genome. They are

    closing the gap between sequencing and analyzing taking the sequenced genome

    data and tuning it into information.

    NextBio

    Bina Technologies

    Portable Genomics

    These companies work sequencing the genome and storing the information alongside

    other data, in order to analyze and personalize medical treatments and trials.

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    Beginning with Bina Technologies. Bina has created a platform that allows users to

    take genomic sequence data, move it, and analyze it. They use a hybrid architecture

    that keeps some data on the premises and some in the cloud, pushing computation

    back to where the data is in order to reduce the data 1000 fold and speed up

    sequencing time and facilitating movement of the data. They are not working on any

    specific disease, but on creating a platform that can be used for large data sets like

    genomic data. Bina illustrates the power of genomics to improve population health.

    Portable Genomics uses a mobile visualization platform for genomics that is related

    to the consumers well-known iTunes platform. The visualization concept brings

    genomics to consumers and professionals in a very simple way, immediately

    understandable and useable in personalized and preventative medicine.

    They are currently focusing on chronic diseases. Portable Genomics exemplifiesbringing the power of information to the individual,

    Lastly we have NextBio, which uses a cloud platform that sits on top of existing health

    systems to aggregate the medical data. It is the epitome of a One Stop Shop for

    genomics, with a particular emphasis in Cancer. Their platform enables genetic

    counselors, pathologists or the tumor board to make decisions regarding patient

    personalized care.

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    How is genomics contributing to the Personal Healthcare ecosystem?

    Personal genomics is a key enabler for predictive medicine, for which a patients

    genetic profile can be used to determine the most appropriate medical treatment.

    People dont come in the same shapes or sizes, so medicine should accommodate

    that. By combining sequenced genomic data to EMRs and other medical data,

    physicians and researchers will get a better picture of disease in an individual.

    Subsequently, treatments will reflect an individuals illness, and not a one treatment

    fits all for diseases.

    http://en.wikipedia.org/wiki/Personal_genomicshttp://en.wikipedia.org/wiki/Personal_genomics
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    In addition to genomics in personalizing healthcare, cancer and clinical trials are

    personalizing the healthcare experience.

    Combining clinical trial data and genomic data, researchers have shifted focus on

    diagnosing and treating cancer based on the cell mutation and not on the area of the

    body from which it stems. For example treating the kind of mutation that causes

    breast cancer, instead of treating all breast cancers as breast cancer.

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    Many of the deaths from cancer are due to inefficient drug treatments.

    As we can see by the pie chart, cancer drugs are ineffective for 75% of the

    population.

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    However we can see that this inefficiency is not only the case in cancer, but across

    the board for a number of diseases. (Or alternately we can see even among

    inefficient drug treatments cancer treatments remain the most inefficient)

    Despite the fact that pharma spends 50 billion dollars per year on R&D to find drugs

    that work, we still see high levels of inefficiency.

    In an attempt to make cancer and other treatments more effective for individuals,

    small start-up companies have turned their attention to using Big Data and data

    analytics to personalize treatments.

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    Here are some of the companies focusing on personalizing treatment for Cancer:

    Explorys

    Ayasdi

    GNS

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    Explorys is a cloud-based platform for storage and analysis of all clinical, financial, and

    operational data related to patient care. To give you an example of size, it has 14

    integrated delivery networks, with 200 hospitals, 40 Million patients and 100 billion

    data elements. It works in Clinical Trials, the idea is to aggregate patient information

    and analyze it on a real time basis.

    Ayasdi uses a more esoteric topological analysis, a math of shapes, on their Iris

    platform, to visualize data in a multidimensional graphic to easily show outliers and

    high or low-response groups in the data, even without pre-specifying the

    characteristics of those clusters. Their research is furthest in Cancer, where they have

    developed a Cancer Genome, and have used their platform to find new biomarkers in

    Cancer.

    GNS Healthcare uses standard math and statistical principles to create what if,scenario models. Their REF next generation machine learning cloud platform engine

    extracts predictive models from the data to determine comparative effectiveness and

    create simulations across an entire patient population and on an individual level.

    They have established themselves in many aspects of healthcare and are now taking

    their expertise to genomics.

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    By personalizing cancer treatment to the type of cell and not the area of the body,

    cancer deaths should decrease exponentially.

    A possible example is pharmaceutical developers, who integrate population clinical

    data sets with genomics data, to better drugs approved in the first place and more

    importantly, to get the right drug to the right person at the right time.

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    In addition to genomics, cancer and clinical trials, mobile health is a driving force in

    personalizing the healthcare experience. In the current digital health revolution

    mobile phones and social media have redefined how we communicate, and online

    games have redefined the gaming community drawing in a much larger audience.

    Now healthcare is seeking to harness this power to improve health.

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    Cheaper, faster, better technology is enabling most of us to connect with each other

    anytime, anywhere; while specialized networks have changed the way we live, work

    and play.

    Mobile is ubiquitous; a 2013 Pew pool reported that 135.5 million American adults

    own smartphones up from 80 million in 2010 with more exponential growth

    expected. Mobile access anytime, anywhere through smart gadgets is putting cheap,

    connected mobile computing power in the hands of millions of consumers and

    healthcare practitioners.

    Gaming has become an increasingly acceptable part of society, and now health apps

    are utilizing this to improve and make managing chronic conditions or complicated

    regimens easier.

    Social applications of the apps include not just networking but crowdsourcing in

    healthcare. Similar in concept to Weight Watchers and Alcoholics Anonymous we see

    the online social networks that gives peer-to-peer support as a means to gather

    motivation and support health related activities.

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    Today there are over 96,000 health apps for mobile devices. Dr. Eric Topol Professor

    of Genomics at The Scripps Research Institute, and author of The Creative

    Destruction of Medicine: How the Digital Age Will Create Better Healthcare, shows us

    what can be done with just a few of these mobile health apps.

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    As the info graphic shows, of the 312 million people living in the US, mobile health

    apps can help over 124 million people with hypertension, 105 million obese adults,

    21 million people with sleep apnea, 79 million pre-diabetics and 81 million adults

    with cardiovascular disease. These are huge numbers and this just addresses chronic

    disorders.

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    The potential for health apps and games are clear. Of smartphone users, 44% are

    looking at using health apps in the future and see it as a way to better adhere to

    treatment regiments. Of non-smartphone users, there is still an interest in using

    mobile apps to improve health.

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    Here are some of the companies that are harnessing the power of mobile to improve

    and personalize healthcare:

    Brain Resource

    AchieveMint

    Aetna CarePass, Ginger.io and OneHealth

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    How is Mobile contributing to the Personalized Health ecosystem?

    Mobile offers a way for individuals to not only keep track of their own health, but to

    collect information in real time. Patients can monitor their own health and be

    motivated to make healthy decisions about eating and exercising, along with

    managing medication adherence. Now patients can literally take their health into

    their own hands

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    As of date, patients arent seeing Genomics, Mobile. Cancer and Clinical Trial research

    in their trips to the hospitals. Comparatively few people have their genome

    sequenced or their personal health data in their hand. Although mobile health apps

    are catching on and there are exciting examples and success stories in Cancer and

    Clinical trials using genomics data, these are just aprecursors of the future. But to

    truly make a lasting impact on healthcare, and centering medical care on the patient,

    companies and entities are going to have to engage in data sharing.

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    An answer to this bottleneck is data sharing.

    The scientific community, researchers and even companies are incentivized and

    compensated based on their individual results, publications, and products. Data

    sharing is an idea that promotes opening up data and technologies by sharing ideas in

    order to improve the product. There are a number of successful examples of such

    data sharing, including the Human Genome Project which I talked about earlier. The

    Project illustrates data sharing between public the government - and private

    company- entities.

    Other examples of data sharing exist between start up companies and academia, they

    include:

    Harvard Medical School & GNS Healthcare

    Ayasdi & UCSF Medical Center NextBio & Emory University

    Oregon Health and Sciences University & Intel

    MD. Anderson and Oracle

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    These are just the beginning steps in sharing data. We need data and sharing on a

    much larger scale and data sharing to improve the healthcare experience in the

    United States.

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    How can you as an individual participate in data sharing? The answer is Citizen

    Science. Different from Data Sharing, citizen science is a form of crowdsourcing

    dealing with the collection and analysis of parts of the data.

    There are two layers to citizen science, collection of data from individual citizens and

    analysis of data by individual citizens. In healthcare, anyone can donate their data

    like their genomic data or EMR data for clinical trials, or collect data on themselves

    through mobile apps.

    Stephen Friend, White House Champion of Change and President, Co-Founder &

    Director of Sage Bionetworks succinctly and accurately explained Citizen science is

    the equivalent of a night science raid on nature. They can grab something and come

    back with results.

    3

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    Are you doing your part in data sharing? Would you like to share your data? Would

    you like to join the citizen science movement to catalyze the personalization of the

    healthcare experience? Here are three great ways to get involved:

    1.Stephen Friends company Sage Bionetworks is the epitome of data sharing.

    Working in an open environment and promoting collaboration across disciplines

    members can combine their knowledge and expertise to make new discoveries.

    2.uBiome lets you donate your xxxx for science

    3.Online there are a number of sites like ScieStarter with games like Fold-it that allow

    individuals to take part in the analysis of data

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    Data sharing and citizen science is driving this revolution, and promoting the

    aggregation of genomics, cancer research, drug research and mobile health to

    personalize the healthcare experience.

    The future of Healthcare is moving to the individual. From genomics to cancer and

    clinical trials, to mobile health. No longer will our health data be slipped into Medical

    records in drawers in the far reaches of the hospital. No longer will we have to wait

    long hours in an Emergency room. These elements of health are finally making

    Personalized Healthcare a part of healthcare in the near future. In the next five years,

    we will be holding our health into our own hands being treated with more accurate

    and efficient treatments using new data streams and taking a holistic view of the

    patient. Using Big Data to personalize the healthcare experience.

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    Sharing song with the hands slide

    Come together at the end