Health 2.0 Conference
Realtime notes from the ninth Annual Health 2.0 Fall Conference at the Santa Clara Convention Center.
Here is the online Agenda:
http://2.healthca.mp/1WIDOXD
## Health Data Exploration Project-Personal Data for the Public Good
Moderated by Bryan Sivak – U.S. Dept of Health and Human Services
The Health Data Exploration project, sponsored by the Robert Wood Johnson Foundation, is a network of academic, public sector, and corporate partners working together to conduct research in how personal health data can be used to answer public health questions (aka personal data for the public good). Join us for this interactive dialogue to learn out about the HDE project as we accelerate the development of new collaborative commercial-academic opportunities enabling precision medicine. You’ll hear about insights from industry leaders about how their companies are collaborating with researchers; learn about opportunities for public and private sector partnerships (and why it’s good for business); and have a chance to participate in a dialogue with leading figures in creating novel industry-academic partnerships.
Speakers
Kevin Patrick
Calit2
Carlos Rodarte
PatientsLikeMe (USA)
Jerry Sheehan
Calit2
Aaron Coleman
Fitabase
Stephen Friend
Sage BioNetworks
Ran Gilad-Bachrach
Microsoft Research
Steve Friend – Sage Bio Networks
Academics pretend to be collaborative unless they see
Synapse at Sage Bio Networks – Creating a Github for Biomedical research
Federal grants are insisting on datasets being published and shared.
Dream Collaborative Challenges
Protected data in the cloud.
Getting many eye balls to look at data.
Google and Amazon have made data available and provided compute resources.
7,000 people involved and growing.
Building communities for data sharing.
Later this week will announce a Mammography Challenge. “Coding for Cancer”
Looking at recall rates.
How do we tackle the gap between Clinical Research and Clinical Care.
Very rarely does knowledge about a disease impact the care regimen.
What will it take to have knowledge and measures about the transitions between stages of health.
We need to get beyond the old standards for measurement, categorization and care.
We have to change the Consent structure and have individuals OWN their OWN data.
NTDM
N = 10,000 to 1M Participants
T = Time (real time monitoring – wearables
D = Dimensions
M = Machine Readable
Pulling data from EMRs in the Medical Industrial Complex isn’t worth much.
Current Measures v Smartphone Measures.
Can we democratize research so that a participant is an equal in the research process.
How do take anecdotes and turn in to Signals.
mHealth ResearchKit was significant in the anonymization of the data – Apple doesn’t know who you are…
25% of participants choose to share with ANY qualified researcher.
Track cognition via Delete, Backspace, Autocorrect and time off the keyboard.
Parkinson app test – Say Ahh into the microphone for as long as you can.
Since launch in March there have been 60,000 downloads.
But now 18,000 participants. All consented.
1,500 daily participants.
The daily tapping test can detect medications being missed.
Also asked people what they felt made them feel better or worse.
Generated 20,000 responses. It wasn’t just medication and sleep. The state of the world around the participants.
They were able to see the state of race relations (Ferguson) and the impact on Parkinson’s disease.
Can we build disease up from measurable features.
[category News, Health]
[tag health cloud, bluebutton]
Mark Scrimshire
IT and Health Data Ninja
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.
Blog: http://2.healthca.mp/1b61Q7M
email: mark@ekivemark.com
Stay up-to-date: Twitter @ekivemark
Disclosure:
I am currently HHS Entrepreneur-in-Residence working at CMS 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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