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The Right Data to the Right People the Right WayMaximilian Ott
This are slides for a talk I gave at Australian Public Sector Data & Analytics Roadshow. It gives a high-level overview of the challenges faced by government agencies to achieve better outcomes through the use of data. Specifically I was highlighting the interdependencies of utility, privacy and access and briefly discussed some of the technologies we are developing to lessen the currently tight bounds between those three elements to ensure that we can put more data into the hands of more people without sacrificing privacy.
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You've made your big data investments, but where is the ROI. The answer may be in data products -- using your data assets to build customer-facing solutions that differentiate and generate new revenue streams. This presentation explains the opportunity and best practices for designing, building, and launching data products.
Whitepaper - The need self service data tools, not scientistsJosh Howard
The federal government is one of the organizations most in need of data scientists, but hiring freezes, slashed training budgets and a lack of qualified candidates have all hampered the ability to recruit these types of professionals. Faced with such obstacles, agencies have been developing creative solutions to fill the hiring gap. Learn how to overcome these challenges with big data analytic tools.
Join our #DataTalk on Thursdays at 5 p.m. ET. This week, we learned from DataKind – Harnessing the Power of Data Science in the Service of humanity, Real Impact Analytics, Elissa Redmiles, a Data Science for Social Good Summer Fellow at the University of Chicago, Nick Eng, Data Scientist at the Center for Data Science and Public Policy at the University of Chicago, Kevin Chen, the Chief Scientist at the Experian, North America Data Lab, and others.
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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
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
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/
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
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
Editor's Notes
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.