Getting to the Heart of Data Sharing


Breakthroughs in analytics technology are wonderful. Every week, we hear about things like new data management software, real-time analytics capabilities, or predictive analytics tools. Those wheels of innovation keep spinning.

Credit: Pixabay
Credit: Pixabay

However, think about analytics tech the way you would a car purchase. The shiny new BMW is going nowhere fast until you or your friendly dealer give it fuel. OK, if it's a shiny new Tesla maybe you're looking for a charger. That analytics tech will gather dust if you don't have access to the data you need.

Maybe access to data/fuel will be a key trend as analytics move into the next stage of maturity. We talk a lot about protecting our own personal data. But, what about the mass of anonymous data already being collected over the years or decades? Consider what the availability of such data can do for the corporate and public initiatives that are hungry for fuel.

For many years organizations like non-profits and government agencies "owned" data. The irony was that it was data that actually was provided by others. I'm sure you've seen the same mindset in the corporate world, where two departments in the same company refuse to share data. You get the impression of some whacked out movie character greedily hoarding gold, "It's mine, all mine!"

Gradually, we're taking the chains off our data. We've seen it with the Obama Administration's Open Data initiative. It may be a work in progress, but it's a start.

As Stu Davis, CIO for the State of Ohio discussed in today's All Analytics Radio Show How Analytics Can Transform State Government, the items at the top of his wish list center on the ability to better share best practices and data -- in responsible and secure ways -- across different agencies.

Now we are seeing more efforts to chip away at the concrete foundations of data silos, allowing data to flow among departments, and, here and there, move among trusted partner organizations.

It's great if that type of sharing helps two organizations to better serve their customers. However, it's really cool if such data sharing helps to reduce the pain suffering caused by America's leading killer, heart disease.

A new collaboration between SAS (sponsor of this site) and the Duke Clinical Research Institute is one example of how data sharing among organizations can work for the good of all of us. A SAS press release said.

    The Duke Clinical Research Institute (DCRI) and analytics leader SAS will provide researchers worldwide with data management and analytics tools to explore 45 years of cardiovascular patient data collected by the Duke University Health System. The DCRI and SAS share the goal of greater transparency and openness in research to improve patient care to find new ways to treat heart disease, the leading cause of death in the United States. For the DCRI, the collaboration represents a significant milestone for its broader data access initiative, Supporting Open Access for Researchers (SOAR).

 

DCRI Executive Director Eric Peterson, MD, MPH, said, “The question at the center of the open-science discussion is not whether data should be shared, but how we can usher in responsible methods for doing so. Our collaboration with SAS will allow data to be shared for the advancement of public health worldwide.”

Michael Pencina, PhD, Director of Biostatistics at the DCRI commented, “While many support open science in theory, to date, few academics have been willing to actually share their own data. This is among the first examples where academic leaders are actually opening their clinical research data to others."

The cardiovascular data is in the Duke Databank for Cardiovascular Disease, and includes de-identified records for patients treated at Duke between 1969 and 2013, and data from more than 100,000 procedures on more than 50,000 patients. That data includes patient demographics, cardiac medical history, other conditions occurring simultaneously (comorbidity), and treatments.

The DCRI and SAS are constructing a data governance plan for the data sets and a means to process requests. Researchers can apply for access to the data sets at soar.dcri.org.

James M. Connolly, Editor of All Analytics

Jim Connolly is a versatile and experienced technology journalist who has reported on IT trends for more than two decades. As editor of All Analytics he writes about the move to big data analytics and data-driven decision making. Over the years he has covered enterprise computing, the PC revolution, client/server, the evolution of the Internet, the rise of web-based business, and IT management. He has covered breaking industry news and has led teams focused on product reviews and technology trends. Throughout his tech journalism career, he has concentrated on serving the information needs of IT decision-makers in large organizations and has worked with those managers to help them learn from their peers and share their experiences in implementing leading-edge technologies through publications including Computerworld. Jim also has helped to launch a technology-focused startup, as one of the founding editors at TechTarget, and has served as editor of an established news organization focused on technology startups and the Boston-area venture capital sector at MassHighTech. A former crime reporter for the Boston Herald, he majored in journalism at Northeastern University.

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Re: Data Sharing
  • 5/19/2016 8:45:30 AM
NO RATINGS

I agree. I used to thinkit was because of privacy concerns, but with many good ways to de-identify the data,the prying off cold dead hands attitude persists. I just hope we see gradual change.

Re: Data Sharing
  • 5/18/2016 11:59:56 AM
NO RATINGS

Seth, the hogging is more than human but financial interest. There is a monetary value at play, so sharing can only be justified if all concerned feel compensated, else it's not good business practice. The case must be made to encourage more sharing by highlighting the not always appearant benefits.

Re: Data Sharing
  • 5/18/2016 11:50:55 AM
NO RATINGS

..

Seth writes


I do believe and witness the growing amount of data sharing.  Some of it though has been via prying someone's elses fingers off of it.  For example regarding "For many years organizations like non-profits and government agencies "owned" data. The irony was that it was data that actually was provided by others.", there is a site called Pubmed that has all the government funded scientific studies in it.  The Feds did not want to share this data but the public sued on the grounds that it was our tax money that paid for it.


 

I my own past comments I've criticized what I perceive as a growing tendency of governmental agencies to refuse to share crucial data (e.g., the innards of a region's transportation model) and regard it as somehow proprietary. Seth is exactly right that taxpayers have paid for this, and deserve access. 

I see this issue as related to "transparency". But somehow, whether under liberal or rightwing administrations (local, state, federal), the shadow of secrecy and obscurity persists.

 

Data Sharing
  • 5/18/2016 3:13:08 AM
NO RATINGS

I do believe and witness the growing amount of data sharing.  Some of it though has been via prying someone's elses fingers off of it.  For example regarding "For many years organizations like non-profits and government agencies "owned" data. The irony was that it was data that actually was provided by others.", there is a site called Pubmed that has all the government funded scientific studies in it.  The Feds did not want to share this data but the public sued on the grounds that it was our tax money that paid for it.

 

It seems like it is still human nature to hog all the data until it is pried out of someone's fingers.

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