data ownership

By Dave Muoio 03:42 pm May 6, 2019
The NIH’s All of Us Research Program celebrated its one-year anniversary today with new updates on enrollment progress, previews of its upcoming cloud-based data platform for health researchers and the public beta launch of an online tool for viewing aggregated, de-identified information about the program’s enrollees. “I hoped [one year ago] that many would share this vision and help us achieve...
By Laura Lovett 03:18 pm February 18, 2019
We are living in a time when there is increasingly more data being collected, opening up more opportunities for researchers. As the industry begins to see patients become consumers, the conversation around this data has begun to include questions of ownership and compensation.  “What we really want to do is empower patients to take back full control of their data,” Nicolas Schmidt, chief product...
By Laura Lovett 03:30 pm December 11, 2018
A new company called LunaDNA has created an avenue for people to donate their health data in exchange for shares in the company. The novel platform seeks to serve the needs of nonprofit and for-profit researchers as well as everyday people willing to share their health data.  “What we aim to do is create a human health database, inclusive of DNA data, clinical, medical, contextual information....
By Laura Lovett 02:15 pm November 28, 2018
Users of the digital health platform Open Health Network are now getting a chance to cash in on their health data with the platform’s new feature, called PatientSphere.  The new feature employs blockchain technology to let patients monetize their health data. The idea is to connect companies or research institutions with folks who fit the criteria they need for different studies or analytics....
By Laura Lovett 02:51 pm August 14, 2018
Humans have hacked all sorts of computer systems, but now we are starting to hack ourselves — specifically, our health and biology. “We [are at] the dawn of what I call the neobiological revolution, which I define as the accelerating movement of ways to use technology and biology to alter the human race,” Jane Metcalfe, cofounder of Wired and editor in chief of NEO.LIFE, told MobiHealthNews. “It...
By Jonah Comstock 11:14 am September 9, 2015
In Topol and Kish's formulation, individual health data will feed into big data breakthroughs. "Give me my damn data" has been a refrain among e-patients for many years. But what does it really mean to own data? That's a much larger question that Scripps Health Chief Academic Officer Dr. Eric Topol and Leonard Kish, Topol's co-founder at unpatient.org, have tackled the question in an op-ed...