Health Data Palooza 2015 BUT WHAT IF I WANT TO SHARE? CONTRIBUTING YOUR OWN DATA TO FOSTER PUBLIC GOOD
Realtime notes from day 3 of the HealthData Palooza 2015 (#HDPalooza) in Washington DC.
If you want your own health data, you can hit the Blue Button and it’s yours to do with as you see fit. The Blue Button project is a stunning success story with about 8 gajillion people (give or take) downloading their personal medical histories. But what if you want to share your data? As the Data Liberation movement matures, it faces a number of challenges around developing open data. How can folks participate in open data if they don’t have six Masters degrees in data science, but simply want to share and help others? How can we protect and secure individuals’ privacy by creating data that meets research needs — by allowing people to opt in or otherwise? Finally, how do we best collect and analyze new sources of data from personal life streams and connect this unstructured data to the health care system?
Moderator: Niall Brennan, Centers for Medicare & Medicaid Services
Geraldine Gueron, PhD, The Wikilife Foundation;
Aaron Seib, National Association for Trusted Exchange;
Maksim Tsvetovat, OpenHealth
Aaron Seib – National Association for Trusted Exchange (NATE)
NATE BlueButton For Consumers NBB4C
NATE Provides a Trust Bundle to make it easier for HIPAA Covered Entities to exchange information with individuals and Customer Facing Applications.
Engaged Patients = Better Outcomes.
Goal is simplified sharing
Geraldine Gueron – The Wikilife Foundation
Nobody has shown us, Consumers, how access to our health data will help improve our life.
The story of Ignaz Semmelweis (1818 – 1865)
He became obsessed with the loss of life of 1 in 5 mothers after giving birth. His solution was “Wash your hands”
Small changes can have enormous impacts.
@DataDonors allow you to collect your health information and allow you to donate. If you share you can compare.
Change the health care game for good!
Maksim Tsvetovat, OpenHealth @maksim2042
People haven’t asked for their data.
Our medical system treats patients as products.
If we are products then Mortality is a scrap rate. We have to change this!
Facebook knows what we had for breakfast. Why aren’t we using that.
OpenHealth is a smart mobile health platform.
$150,000 to create a mobile app. Smart Health can create a custom app in a day.
Democratizing Data Collection
Open Health lets the patient drive the dialog. They know the questions to be asked.
Ask. Patients are not children (even when they are! )
Q: How do we put together the messaging for why patients should want their health data?
Niall Brennan: How do we activate 50-70% of the population….
Q: Have any projects found a way for patients to correct a record.
Aaron Seib: Open Notes is an effort to engage the patient and allow them to annotate the medical record.
Q: How do I share without putting my data in the hands of other organizations? What happens when I no longer want to share.
div class=””>Then Organizations like NATE can provide a level of confidence about the authenticity of the hosts and endpoints.]
We have the power to track everything. You don’t know what you will need to know.
[category News, Health]
[tag health cloud, bluebutton, hdpalooza]
Mark is available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. If you need help to move, or create, your health applications in the cloud let’s talk.
Stay up-to-date: Twitter @ekivemark
I am currently HHS Entrepreneur-in-Residence working on an assignment to update BlueButton for Medicare Beneficiaries. This involves creating a Data API. Watch out for more about BlueButton on FHIR.
The views expressed on this blog are my own.
I am also a Patient Engagement Advisor, CTO and Co-Founder to Medyear.com. Medyear is a powerful free tool that helps you collect, organize and securely share health information, however you want. Manage your own health records today.
Medyear: Less Hassle, Better Care.
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