Tuesday, May 10, 2016

#HDPalooza Open Science

# SPECIAL FOCUS: A New Model for Discovery: Open Science from Research to Care, and Back
As our appreciation for the complexity of people and systems increases, and as new data streams and opportunities for discovery abound, a critical transformation is taking root. Both producers and end users of research are realizing that they will get further, faster by working together, by involving non-traditional partners in the process, and by making their work (and data!) more transparent and accessible. Join this exciting panel as discussants involved in this new era of open science share their insights and experiences across the full spectrum, and challenge us all to do more.

  • John Wilbanks, Sage (Moderator)
  • Bradley Crotty, Beth Israel Deaconess
  • Bray Patrick Lake, Duke University
  • Jerry Sheehan, White House Office of Science and Technology Policy

A New Model for Discovery – Jerry Sheehan

OSTP Public Access memo – 22 Feb 2013.

Any agency spending >$100M had to make research data more accessible.

Digital Data:
– Maximize free access
– Data Management Plans
– Inclusion of costs in funding applications

16 Federal agencies have complete public access plans.

PubMed Central is the repository for NIH, HHS and VA, CDC.

88% of datasets are not in publicly accessible repositories. This is not 88% of data. There has been a focus on high value datasets.

Quality Improvement v Research

Quality improvement is to create improvements within an institution.
Research is generating Generalizable knowledge

Bray Patrick Lake

Bray has a useless but complete Longitudinal health record: Two large binders and a couple of disks. Impossible to use.

John Wilbanks: Scholarly articles are still like Yahoo! 1996. Only 20 years behind the Internet world.

A new deal in Science: More capacity available to the individual. We need a framework to reset the culture.Federal Funding can drive the change.

Editor Note:

Should we be connecting the threads:

  • Researchers reluctant to use Patient Generated Data
  • Clinical/Admin EMR data is used as source for research
  • Patients when they get their records find many errors, sometimes repeated for years.

Why isn’t the Patient fully engaged in Research to help validate the underlying data.

[category News, Health]
[tag health, cloud, ONC, opendata, hdpalooza, bluebutton]

Mark Scrimshire
Health & Cloud Technology Consultant

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

I am currently HHS Entrepreneur-in-Residence and CMS BlueButton Innovator working on an assignment to update BlueButton for Medicare Beneficiaries.

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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