Presentation at the Congressional Luncheon Series - Unlocking the value of Health Data
Citation: Purao, S. 2011. Unlocking the value of health data, Presentation to the congressional staff. Washington, DC. October 2011.
Unlocking the value of health data - Presentation at the Congressional Luncheon Series - Oct 2011
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Unlocking the Value of Health Data
Sandeep Purao, Ph.D.
Research Director, Center for Enterprise Architecture
Associate Professor, College of Information Sciences and Technology
Penn State University, University Park, PA
Congressional Luncheon Series, 5 October 2011
I am Sandeep – Sun–Deep Purao – like Perot but spelled differently as you can see. I am on the faculty of the College of Information at Penn State. Would like to begin by thanking Neal for inviting me to a part of this panel of presenters. I am glad to be here and am glad to see a large turnout.
My mandate today is to talk fairly broadly about the role of data in healthcare. My expertise here is on the word “data” instead of the word “healthcare.” So, with that in mind, I will try to accomplish three goals in the short talk today.
First – I would like to add some structure to this large and intractable problem of how to deal with data in the context of healthcare. Structure is important because it allows us the ability to identify different components and focus on the one that we deem are critical. Second – I would like to point out some ongoing research in select areas that are suggested by this structure. My intent here would be to share with you opportunities where the healthcare community may be able to leverage some of these research results. Third – I will point out areas where existing research in allied disciplines may not be sufficient or specific for healthcare. This may be one way to distill the arguments in the talk so that efforts and resources may be brought to bear on these areas of research.
So, the structure I propose is simple. - The first dimension of the structure is the Data Cycle – A data life cycle acknowledges the phase through which data must flow
The second dimension of the structure are the different categories of data one sees in healthcare settings The first two layers are – clinical and administrative software and adds two others – publicly available data and primary data. These are the horizontal layers. I know this audience knows it well but I will spend a precious minute from the time allocated to me in explicating each. The clinical layer refers to actual patient data such as ailments, medications, vitals etc. The administrative layer refers to data about managing the healthcare delivery system including payments, insurance, schedules etc. The third layer is public data. Consider, for example, webMD, books – increasingly, digitized, physician ratings etc. We can also include publicly available research outcomes such as those in Pubmed or Medline. The final layer is primary data. This is data such as clinical trials (see clinicaltrials.gov), data that researchers collect about obesity and exercise patterns, and data about what makes regional health networks work – collected with surveys and interviews.
In each cell, I see several opportunities. In each cell, there are also known problems. I would not be here if we did not know the opportunities. I am here because we realize that there are problems that we must overcome to realize the promise of “data in healthcare.” So, let me address some key problems – before I do that I cannot resist the temptation to quickly show you how the simple structure can be seen from different perspectives such as - .
So a physician may see things differently – as would a patient and a lawyer and a policy maker – These are often implicit – making them open allows us to be clear about where we are focusing
So here are some key problems then – I have selected four from a long list