data innovation and the federal big data working group

Data Innovation and the Federal Big Data Working Group http://www.meetup.com/Federal-Big-Data-Working-Group/

What if . You could meet with a dedicated team of data scientists from the Federal government Academia and Industry To prototype and share new BIG DATA technologies Every month For free

You can! Simply join us at http://www.meetup.com/Federal-Big-Data-Working-Group/

What is FBDWG? 712 + Co-hosts focus

Data Science for Big Data Dr. Brand Niemann Director and Senior Data Scientist/Data Journalist Semantic Community http://semanticommunity.info/ http://whartondcinnovation.com/ April 29, 2015 5

Overview Federal Big Data Working Group Meetup Silicon Valley to Washington First White House Data Chief Discusses His Top Priorities Precision Medicine and Natural Medicine Tech Meetup at White House USDA Data Science MOOC 6

The Profit and Data Enterprises Marcus Lemonis (born November 16, 1973) is a Lebanese-born American businessman, investor, television personality and philanthropist. He is currently the chairman and CEO of Camping World and Good Sam Enterprises, and the star of The Profit, a CNBC reality show about saving small businessesthrough People, Process, and Products. http://en.wikipedia.org/wiki/Marcus_Le monis The Federal Big Data Working Group Meetup is also about helping government agencies develop:Federal Big Data Working Group Meetup People Data Scientists/Chief Data Officers Process Data Infrastructure Products Data Publications Some examples: EPA FDA NOAA HHS USDA Eastern Foundry And provide MOOCs/Meetups for training and networking. 7

Federal Big Data Working Group Meetup Federal: Supports the Federal Big Data Initiative, but not endorsed by the Federal Government or its Agencies; Big Data: Supports the Federal Digital Government Strategy which is "treating all content as data", so big data = all your content; Working Group: Data Science Teams composed of Federal Government and Non-Federal Government experts producing big data products; and Meetup: The world's largest network of local groups to revitalize local community and help people around the world self-organize like MOOCs (Massive Open On-line Courses) being considered by the White House. 8

Silicon Valley to Washington Crafting Obama Administration Tech Policy: Megan Smith, from Google Inc., to be U.S. Chief Technology Officer (CTO) Alexander Macgillivray, from Twitter Inc., to be Deputy CTO Tony Scott, from VMware, to U.S. Chief Information Officer (CIO) Mikey Dickerson, from QSSI, Google, and Obama for America, to U.S. Digital Service Administrator DJ Patil, from VP of Product at RelateIQ and the Data Scientist in Residence at Greylock Partners, to be Chief Data Scientist David Portnoy, Aginity LLC, to HHS IDEA Lab Fellow, Datalytx, Inc. and Healthbox 9

First White House Data Chief Discusses His Top Priorities At the top of my list right now is the Precision Medicine Initiative. Science has enabled us to unlock the human genome. Now we want to combine that with the power of data science, which uses new techniques like machine learning as well as the explosion of data now available about individual patients, whether through their phones or other sensors in their environment. The challenge is putting this together to come up with new ways to think about health care and medical treatments.human genome Semantic Medline and Natural Medicine for Disease and Wellness Meetup My second priority is opening up more data and making it available for people [both the government and general public] to build an ecosystem of research, mobile apps and visualizations on top of that information. Semantic Community and Federal Big Data Working Group Meetup The third main priority is inserting more data capacity into agencies throughout the government. Were seeing a rise of data scientists and chief data officers at the National Institutes of Health as well as within [the Department of] Health and Human Services. The Commerce Department announced its first chief data officer [Ian Kalin] last week. We have to decide how to use the best of what we see in data science and statistics groups throughout the government to develop new services.National Institutes of HealthHealth and Human Servicesannounced its first chief data officer Federal Big Data Working Group Meetup and Eastern Foundry 10 http://www.scientificamerican.com/article/first-white-house-data-chief-discusses-his-top-priorities/

Precision Medicine and Natural Medicine Tonight, I'm launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes and to give all of us access to the personalized information we need to keep ourselves and our families healthier. President Barack Obama, State of the Union Address, January 20, 2015 On May 4 th, Im launching the Natural Medicine for Disease and Wellness Meetup, Brand Niemann, Data Scientist/Data Journalist. 11 In early 2013, our Semantic Medline Data Science Team found that cancer immunotherapy was becoming more successful than cancer chemotherapy. Also that certain enzymes have been successful in schizophrenia and lithium, an element, in manic- depression (bipolar disorder).

Tech Meetup at White House https://www.whitehouse.gov/blog/2015/04/14/friday-tech-meetup-white-house-0 12

USDA Data Science MOOC My Note: In Process for May 18 th Meetup 13 http://semanticommunity.info/Data_Science/USDA_Data_Science_MOOC http://www.meetup.com/Federal-Big-Data-Working-Group/events/221457264/

Upcoming Meetups President's Chief Data Scientist and EPA Big Data Analytics, April 20, 2015. The Wharton DC Alumni Innovation Summit, April 28-29, 2015. Natural Medicine for Disease and Wellness Meetup (New Meetup) Data Science for Natural Medicines and Epigenetics, May 4, 2015. USDA Data Science MOOC Meetup, May 18, 2015. Government Technology & Innovation Incubator for Big Data Analytics III, late May, 2015. DATA Act Challenge Cup. Data Science for Homeless Data: QlikView. Tableau, & Spotfire Bakeoff, June 1, 2015. Data Science for USGS Minerals Big Data, June 15, 2015. Data Science for Cyber Physical Systems-Internet of Things, June 29, 2015. 14 http://www.meetup.com/Federal-Big-Data-Working-Group

Right Brain Business Analytics Business outcomes driven data analytics RK Paleru Business Intelligence & Systems Executive | Data, Digital & Analytics Officer | Senior IT Finance Leader http://informationanalytics.tumblr.com The content of this presentation is protected under Copyright laws. All data presented is mocked up and anonymized. Not for public distribution.

Right Brain and Business Analytics You cant solve the problems using the same thinking that created them in the first place ~ Albert Einstein

Drive Cash Flow Manage Costs Improve Profits Mitigate Risk CFO FP&A Controller TaxIT CFO priorities do not change in the analytics era.. .but how they approach has changed

Customer Profitability, an example Who are my profitable customers? Profits 100% 140% 80% Aggressive Retention Passive Retention Proactive Profit Oriented Retention Customers Highly Profitable Customers Profitable Customers Loss Making Customers Dimensional shift from traditional product to customer accounting Revenue recognition and cost allocation (including ABC) Customer Segmentation Targeted Marketing Mix Whale Curve Information IntelligenceInsightAction

Right Brain Business Analytics - Some Examples Analytics use cases Revenue Spend Forecasts Products & Services Higher Education headwinds Competition from MOOCs Falling enrollment Rising costs Tuition dependence

Revenue Analytics - Promoting Cross Sell / Up Sell

Spend Analytics - Influencing Expense Management

Program Analytics - Optimizing product and service offerings

Forecast & Variance Analytics - Proactively steering the business

Operational Analytics - Finding outliers for billing errors

How are we doing? What should we be doing? Why? Finance Product Development Operations Human Resources IT/Systems Customer Service Marketing Sales In Summary Right Brain Business Analytics Plan, execute and optimize performance

Thank You! RK Paleru [email protected]

INNOVATION, BIG DATA, AND THE FAMILY CAREGIVER MaryAnne Sterling Co-Founder, Connected Health Resources @SterlingHIT April 29, 2015

93,000,000

522Billion

2014 CONNECTED HEALTH RESOURCES 31 INFORMATION NEEDS Allergies Transportation Insurance Medications Assisted Living Diagnosis Hospice Diseases Immunizations Appointments Doctors Care Plan Support Group Treatment Medical Equipment Specialists Test Results ADLs Home Safety Medicaid Respite Care Financial Choices Advocacy Services Rehab Meals-on-wheels Medicare Mental Health Advanced Directive Home Health Senior Center Visiting Nurse Social Workers Assistive Devices Nursing Home Health History

CAREGIVING INFORMATION CYCLE 2014 CONNECTED HEALTH RESOURCES 32 Crisis Accident/injury New Diagnosis Care Transition New Care Setting New Phase of Recovery/Illness Maintenance Chronic Condition Permanent Disability

CRISIS 2014 CONNECTED HEALTH RESOURCES 33 Caregivers may need to provide patient information to healthcare professionals, including Allergies and health history Family health history Immunizations Test results/labs/films Health insurance Caregivers need to gather information, including Diagnosis or injury details Disease-specific information Care options Next steps Crisis Accident, injury, or new diagnosis

CARE TRANSITION & MAINTENANCE 2014 CONNECTED HEALTH RESOURCES 34 The patients care plan Housing/caregiving options (i.e. rehab, home health, nursing home, hospice) Community resources (i.e. meals on wheels, transportation) Instructions for performing caregiving activities Medical equipment Care Transition new care setting or new phase of recovery/illness Long-term care supports Financial options Assistive devices Medication regimens Respite care Support groups Maintenance chronic condition or permanent disability Caregivers may need to gather information about

FAMILY CAREGIVERS & TECHNOLOGY 2014 CONNECTED HEALTH RESOURCES 35 Categories of Activities that Technology can Support

CRISIS 2014 CONNECTED HEALTH RESOURCES 36 Crisis CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Managemedication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connectwith other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

CARE TRANSITION 2014 CONNECTED HEALTH RESOURCES 37 Care Transition CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Manage medication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connect with other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

MAINTENANCE 2014 CONNECTED HEALTH RESOURCES 38 Maintenance CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Manage medication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connect with other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

TECH CHALLENGES FOR FAMILY CAREGIVERS Very few tools are designed specifically for family caregivers and their information needs Availability of these tools does not guarantee access to information Finding time to incorporate new technology into daily routines is often prohibitive, along with the applicability of technology to real-life caregiving scenarios Uncoordinated technology (e.g. multiple patient portals) may simply create more silos The language of healthcare is not the language of the average American Not all caregiving challenges can be solved with technology 2014 CONNECTED HEALTH RESOURCES 39

DATA BARRIERS Electronic access to personal health data is spotty. Blue Button is still in its infancy. It is difficult to obtain medical records. Information on the web is not curated and written at a high literacy level. It becomes a mine field for caregivers to find, sift through, and comprehend medical information. Patient (and Caregiver) Generated Health Data is not widely accepted and no framework exists for receipt/review/response of PGHD by providers 2014 CONNECTED HEALTH RESOURCES 40

BLUE BUTTON? Lead by the Office of the National Coordinator for Health IT (ONC) A way you can access your health records electronically so you can: Share them with your doctor or trusted family members or caregivers Check to make sure the information, such as your medication list, is accurate and complete Plug your health information into apps and tools that help you set and reach personalized health goals Healthcare providers or health insurance companies may offer you the ability to view online, download, and share your health records via Blue Button but not everyone participates yet More info: http://www.healthit.gov/patients-families/blue-button/about- blue-buttonhttp://www.healthit.gov/patients-families/blue-button/about- blue-button 2014 CONNECTED HEALTH RESOURCES 41

CONNECTED HEALTH RESOURCES 42

CONNECTED HEALTH RESOURCES Who we areThe services we offer 2014 CONNECTED HEALTH RESOURCES 43 Women-owned start-up led by veterans in healthcare and caregiving Team comprised of leading technology and service providers Addressing health literacy, social determinants of health, and care transitions Community Health Gateway: Personalized health platform that addresses health and social services needs across the care continuum Tools to help patients more easily understand their health information and the healthcare system One platform for providers, patients, and family caregivers

2014 CONNECTED HEALTH RESOURCES 44 PERSONAL HEALTH PLATFORM One platform for providers, patients, and family caregivers

CLINICAL TRANSLATION 45 Low Health Literate Clear, simplified discharge instructions in patients language and English Plus patient-specific medication regimen summary 2014 CONNECTED HEALTH RESOURCES English, Spanish, Mandarin, Cantonese, Korean, Haitian, Creole, Italian, French, Arabic, Russian, Bengali, Polish, Karen, Burmese, Somali, Swahili, Vietnamese, Yiddish Coming soon: Farsi, Brazilian Portuguese, Tagalog

2014 CONNECTED HEALTH RESOURCES 46 COMMUNITY RESOURCE FINDER 1) Think about your familys needs 2) Learn about available services 3) Find service providers in your community

CHR FIRSTS (AKA INNOVATION) First to develop a shared platform where health and social service providers, patients, and family caregivers ALL contribute information to support the patients health goals First to use SureScripts pharmacy data via the Maryland HIE to support medication therapy management First to tackle a plain-language consent process 2014 CONNECTED HEALTH RESOURCES 47

WHAT IF Google maps showed us where an Assisted Living facility was located and if they had a Medicaid bed available CMS made timely prescription drug information available to patients and their caregivers online in all federally supported programs Medicare, Medicaid, and Marketplace CMS enabled identification/authorization of family caregivers through Medicare.gov and providers queried to know who represents health proxy, advocate and spokesperson for patients when needed The industry moved beyond Blue Button and portals to support easy data aggregation by patients along with tools for translation Patient Generated Health Data became part of the fabric of healthcare and clinical research 2014 CONNECTED HEALTH RESOURCES 48 CMS = Centers for Medicare and Medicaid Services

2014 CONNECTED HEALTH RESOURCES 49 Healthier Community Easy access to coordinated healthcare, social services, community supports Care planning and daily living support for patients and families in health crisis Patients and families engaged thru plain language and multilingual information BIG DATA SHOULD ENABLE Healthcare happens in the community

CONTACT INFO 2014 CONNECTED HEALTH RESOURCES 50 Email: [email protected] Website: www.connectedhealthresources.com Twitter: @SterlingHIT

data innovation and the federal big data working group

Documents

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explosion of data

big data products

agencies big data

federal big data initiative

data science teams

power of data science

new big data technologies