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Rethinking the Power and Potential
Of Personal Health Records
March 15, 2013
National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20892
Thank you for this opportunity to comment on training needs in the BD2K initiative. We strongly support the initiative and agree that new kinds of knowledge are needed to work with large data set analytics. Our experience here at Project HealthDesign bears directly on some of the issues you’re addressing with BD2K. While our data came in small or large sets (sensor data captured every five seconds or observations recorded daily), we have come to recognize that big data means more than just volume.
We would like to see an even further expansion of the BD2K focus to address not only the size of data sets, but the type of data to be analyzed. In order for researchers to be fully prepared to handle future data-intensive enterprises, they need to adopt a broader definition of what constitutes relevant data, particularly when it comes to health care. Clinical profiles of patients rely both on data generated in the clinical area as well as data generated in the everyday lives of patients. We believe that new approaches to behavioral and computational science must account for health data that is generated outside of the clinical or professional setting -- data that is both defined and generated by patients rather than by clinicians. We call this data “Observations of Daily Living” (or ODLs) -- information defined and generated by patients themselves as they go through their daily lives and attend to their own health status. Project HealthDesign has learned that clinical data alone is not enough, and that expanding the health data set to include a patient’s perspective is imperative to a developing workforce charged with analyzing technical innovations, effects of medications, and outcomes of care.
Over the last eight years, our researchers at Project HealthDesign have faced the issues associated with the persistent collection of patient-generated data from a variety of settings through mobile devices and other home-based mechanisms. The sheer volume of health data was enlightening and challenging, but we found even greater challenge and opportunity in processing the rich and varied health data from individual patients, collected in the course of their everyday lives.
Maximizing the value of this rich and varied information must take into account the following idiosyncratic definitions of data elements that sometimes characterize this data:
As you begin looking at Big Data 2 Knowledge, we advise you to consider not only volume, but high levels of variability and irregularity in the data stream. We thank you again for your efforts in building a workforce that is equipped to analyze health data that will produce the maximum benefit to patients.
Patricia Flatley Brennan, RN, PhD
eRA Commons Username: pattifbrennan
Director, Project HealthDesign
Moehlman-Bascom Professor of Nursing and Industrial Engineering