I really enjoyed this piece, by Barb Darrow, about the development of healthcare-related data management at the University Pittsburgh Medical Center (UPMC) for a number of reasons. First of all, as the article explains, UPMC is a leader in the area and is doing some really interesting things! Secondly, I always enjoy a good story about the economy of Pittsburgh, since it represents one of the best cases (the best case?) of transforming a US rust belt city into a 21st century City (Health care and robotics are among the key fields relevant to that success.). Finally, and most significantly, the issues raised in the article demonstrate that mastering new levels of data management do not lead to ease and simplicity but rather, to even greater opportunities and challenges.
In the case, of UPMC, getting a head start on developing Electronic Medical Records has led, first of all, to the challenge of coordinating independent systems across specialties. Being able to manage enormous amounts of granular data, and to understand how to deploy that data, is one of the frontiers beyond the systems coordination step:
Doctors now try to take a more holistic view of their patients, and that requires the ability to pull together data from different sources. Imaging data is separate from surgery notes, which is separate from pharmacy data.
“If we look at big data, the idea is how to interconnect multiple points of data across the broad, biological continuum,” Shrestha said. “If the patient is diabetic, you don’t just see an endocrinologist looking at the liver in terms of liver function tests or any scans but across the biological spectrum of organs and then down to a cellular level. We look at pathology slides, reports on molecular imaging and down to the genomic levels.”
Darrow explains that data can be broken down into three buckets: imaging data, which accounts for close to 50% of UPMC’s digital information; databases, which account for about 10%; and unstructured information, such as “postoperative notes, radiology reports, discharge summaries,” which accounts for the remaining 40%. The piece goes on to describe some of the specific technologies that are being used to address these various categories and concludes by pointing to another, even further frontier: the integrated management of pathology reports.
Big data, as the article in which I found the above reference would argue, is here to stay. The more we know, the more we that will become knowable. Personally, I find the challenge daunting
Integrating data systems across municipal human services departments (such as those of public health, social work, and education) may conjure up images of Big Brother for some but, according to Dr. John Fantuzzo of the University of Pennsylvania, the spirit that we bring to the task may have the greatest ramifications: “The integration of data systems across city agencies can empower regular people if we take advantage of the opportunity by presenting attractive interfaces with thoughtfully organized information to the general public. If we continue to see data as simple a mechanism for fulfilling reporting requirements, however, I do think that we will have missed a big opportunity.”
Fantuzzo, along with his fellow principal investigator, Dr. Dennis Culhane, and Executive Director, Dr. Phillip Hawkins, is leading an effort to establish a community of experts who can establish standards, ethical and technical, for the establishment of Integrated Data Systems across human services departments; can develop research regarding best practices in the field; and who can then proceed to guide interested parties in improving the coordination of data collection, sharing, and analysis across departments, and between institutions and the general public. The work builds on Culhane and Fantuzzo’s earlier collaboration with Dr. Trevor Hadley (all three of Penn) to develop a Kids Integrated Data Systems (KIDS), in Philadelphia, that Fantuzzo suggests could eventually become part of that city’s governance practices.
Fantuzzo’s ambitions are high: “The demand to make data relevant to, and interactive with, the lives of teachers, parents, doctors, and all community members is an ethical, as well as an economic, one. We shouldn’t just deal with data as if its collection and distribution were a formal ritual designed only to release funds.”