Why We Need to Take Control of our Digital Identities & Health Information
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Why We Need to Take Control of our Digital Identities & Health Information was a talk I gave for the Technology Association of Oregon Ignite TAO Health
![Why We Need to
Take Control of our
Digital Identities &
Health Information
✚ ~18 Years in Health IT
✚ Recovering Epic Consultant
✚ Open Source/Open
Standards wonk
✚ VP Of Marketing at
YouBase.io
✚ Data Geek
✚ Patient Advocate
✚ Fellow Human Being
Background: “Data.Tron” [8K enhanced Version] by Ryoji Ikeda in transmediale 10.
Nate DiNiro – Nate@YouBase.Io](https://image.slidesharecdn.com/2018-171120210318/85/Why-We-Need-to-Take-Control-of-our-Digital-Identities-Health-Information-1-320.jpg)
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Why We Need to Take Control of our Digital Identities & Health Information
- 1. Why We Need to Take Control of our Digital Identities & Health Information ✚ ~18 Years in Health IT ✚ Recovering Epic Consultant ✚ Open Source/Open Standards wonk ✚ VP Of Marketing at YouBase.io ✚ Data Geek ✚ Patient Advocate ✚ Fellow Human Being Background: “Data.Tron” [8K enhanced Version] by Ryoji Ikeda in transmediale 10. Nate DiNiro – Nate@YouBase.Io
- 2. Health: spending continues to outpace economic growth in most OECD countries OECD -2011 US Healthcare Industry is HUGE We spend the most for “Middle-of-the-Road” outcomes ~17-18% GDP ~2.7 TRILLION Expected to hit 20% GDP by 2025!!! CMS - 2/25/2017 https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2017-Press- releases-items/2017-02-15-2.html
- 3. LOTS of money is being made off of YOUR data. “…Per Lofberg of CVS: “The patient is not really a component of this because their name and connection to the prescription have been stripped off.” Your private medical data is for sale – and it's driving a business worth billions The Guardian – January 2017 “…the company reported 2015 net income of $417 million on revenue of $2.9 billion” This Little-Known Firm Is Getting Rich Off Your Medical Data Fortune 02’16
- 4. HIPAA also governs YOUR RIGHTS of PHI Access & Consent ”…we know that physicians and practices are having a heck of a time getting some vendors' products to perform even the most basic health information exchange transactions with patients and other providers.” David Kibbe, President and CEO of DirectTrust, a nonprofit collaborative to support interoperability. October 27, 2017 – Modern Healthcare
- 5. You can do what you want with it! “Why do you want your medical records? They’re a thousand pages of which you understand 10.” Epic CEO Judy Faulkner to Vice President Joe Biden in January 2017 Biden responded, “None of your business, if I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you
- 6. Why is it important that you exercise your rights? http://bit.ly/2017-health-data-breaches http://medicaleconomics.modernmedicine.com/medical-economics/news/engaging-patients-decrease-costs-and-improve- outcomes
- 7. …your health… …your family’s health…
- 8. ...the health of your neighbors... https://thisispublichealth
- 9. ...lowering costs & improving outcomes... https://www.beckershospitalreview.com/accountable- care-organizations/supporting-aco-success-with- meaningful-patient-engagement.html The Growing Value of Digital Health Evidence and Impact on Human Health and the Healthcare System Institute Report November 7, 2017
- 10. ...Distributed Ledger Technologies, Smart Contracts, and Blockchain... FUN WITH MERKLE TREES
- 11. …Smart Cities: Enabling a “learning” health system… “The technologies employed in the smart cities play a significant role in reducing costs associated with contamination poisoning, Zika spreading, diabetes complexities, and more.” Mike Steep and Marzieh Nabi, Ph.D., Xerox PARC Forbes - 06/2016 https://www.forbes.com/sites/mikesteep/2016/06/27/can-smart-cities-improve-the-health-of-its-citizens/
- 12. Healthcare is changing… That’s for sure
- 13. Expect the way that your healthcare is paid for and delivered to change
- 14. The costs are stealing our children’s financial future… http://www.visualcapitalist.com/63-trillion-world-debt-one-visualization OECD Health spending: Government/compulsory / Voluntary / Total / Out-of- pocket, US dollars/capita, 2016 or latest available
- 15. Regardless of what side of the aisle you’re on…
- 16. Think about your health & your families health…
- 17. …our health, being our first wealth… The first wealth is health.Ralph Waldo Emerson
- 18. …and the health of your neighbors & community… …for social equity too…
- 19. Because we’re all in this together!
- 20. Why We Need to Take Control of our Digital Identities & Health Information Background: “Data.Tron” [8K enhanced Version] by Ryoji Ikeda in transmediale 10. Thanks! Nate@YouBase.Io
Notes de l'éditeur
- 1. Hello, My name is Nate DiNiro I am VP of Marketing at YouBase, a company focused on making health data more patient-centric. ...which draws on my nearly 20 years in Health IT and in various sectors of the industry … I am presenting you a case for why it's so important for each of us to get a handle on our “digital selves”
- 2. Healthcare industry in the US is huge; - ~17-18% GDP --Expected to be 20% by 2025 - link -While we pay the most, twice as much as the next country in the list - We get outcomes that are middle-of-the-road
- 3. LOTS of money is being made off of YOUR information. - All of the places where you data is captured are set up to share with companies like IMS - Health data holders are a lot less likely to have ways to share comprehensive health information with you
- 4. HIPAA governs YOUR RIGHTS to access, and consent around use -You May have heard the term “Data blocking?” It’s when data doesn’t flow between providers themselves, as well as patients - The problem is pervasive enough that the HHS is exercising special oversight over the problem. - Fear, and business models, why is health info far more valuable to hackers than CC#’s? Same applies to Pharma & research
- 5. Once YOU have it, you can do what you want with it - Professionals often question the utility of the information to patients, like this exchange at a Cancer Moonshot meeting… The question wasn’t asked by the CEO of arguably the most widely used EHR
- 6. Why is it important that you exercise that right? - Your Health and Safety & the health and Safety of family, loved ones and friends. - I will say it again; There’s a reason your health information is valuable, and we have yet to scratch the surface of how it benefits us individually
- 7. Another reason...Your health, and your family's health... - As we continue to understand populations better, the utility of your data compared to populations will offer you insights. - Understand risk and benefit from your health choices to make better decisions
- 8. Also...the health of your neighbors... - Your data can be used collectively with others to improve public health - Health improvements have downstream economic and social benefits
- 9. ...lowering your costs and improving your health outcomes... - Having your health information available to providers means that you can better manage health costs - Taking advantage of a future that includes personalized approaches & Precision Medicine
- 10. ...Distributed Ledger Technologies, Smart Contracts, and Blockchain... - Enable new ways to use your data as decentralized trust systems could enable a way to manage costs and consent - Expect the insurance industry to be transformed by the combination of patient data and decentralized trust systems
- 11. ...Smart Cities... - Achieving “The Learning Health System” by analyzing a breadth of factors that affect the health of citizens - Enabling feedback loops to improve the quality of life of citizens
- 12. Healthcare is changing, that’s for sure - If you have been paying attention to the press - Amazon, Healthcare laws, CVS/Aetna, Apple, precision medicine, AI/ML
- 13. Expect the way that your healthcare is paid for to change - - Your guess is as good as mine - ERISA/Associations seem to be the direction that the present Administration is going to “cover everyone - Providers going “at-risk”
- 14 The costs are stealing our children’s future - This is a stark reality we face, that our healthcare costs are potentially stealing the financial future of our children - https://data.oecd.org/healthres/health-spending.htm - http://www.visualcapitalist.com/63-trillion-world-debt-one-visualization
- 15. And regardless of what side of the aisle you’re on… - Because the machine is political, but the real costs are human -
- 16. Think about your health, and your families health… - -
- 17. And their wealth, being their first health… - Thoreau wasn’t a doctor, but he knew something very important about our health, but he understood social determinants - ...and what it means for our overall health
- 18. And that of your neighbors and community; for social equity… - People with more time and money are much more likely to get access to information - Access to one’s health information is most certainly an equity issue; and has effects on our economy that are clear
- 19. Because we’re all in this together. - If we have learned anything about society, it’s that we all rely on one another -
- 20. Thanks! - Thank you, and thanks to the rest of the speakers. - Hopefully this, and all of our presentations illustrates why having control of your health information is so vital - We’re presently looking for more partners, raising a round of funding, so grab me if you are interested in hearing more.