"Textural notes are how doctors communicate with other healthcare providers about what's going on with a patient, what's the plan for treatment and what are the concerns," said Dr. Isaac S Kohane, a professor of pediatrics and health sciences technology at Harvard Medical School & Children's Hospital.
Kohane is frustrated that it's easier to find out more about shoppers' experiences with a digital camera purchase than to determine what adverse events patients had with a particular drug. So, along with several colleagues, Kohane developed free open source software called i2b2 informatics that can collect both physician notes and other unstructured data as well as codified medical data from a patient's bedside.
The informatics platform is used by more than 100 academic health centers around the world. It has been used to pinpoint genetic predictors for diseases such as rheumatoid arthritis and to identify harmful drugs.
For example, the informatics engine revealed that there was a higher risk of heart attack from the drug Avandia than from other drugs in the same class.
When the i2b2 software was deployed in hospital emergency rooms, it was able to predict, on average, two years in advance of the typical healthcare system whether a patient was suffering from domestic abuse by detecting physical traits, Kohane said.
"At the same time, this is almost like a back door. The data is being offloaded and analyzed [after the fact]. What about real-time care of patients across healthcare systems?" he said.
In chronic care, what matters most is that a doctor be able to access clinical data warehouses that contain information on thousands similar patients.
"What matters is the ability for the doctor to say you have these four diseases and you're taking these four drugs, here are the results of treating these other similar patients," Shah said. "There is no clinical trial that has every looked at these four diseases and the effect of these four drugs."
When data from EHRs can be exchanged seamlessly, a physician will be able to query what thousands of other doctors did in the same situation.
"Then I want to ask myself, 'What am I worried about with this person: Am I worried about blood clots or heart attack?" Shah said. "Then I can query what happened to the 1,000 other people who suffered a blood clot and determine ... that outcome in those people very similar to you."
"It's sort of like doing a clinical trial in silicon," Shah continued. "I refer to this whole process as practice-based medicine."
Historically, medicine has relied on published guidelines for treatment or the results of clinical trials for drug prescriptions, which always focus on one disease and most often use only younger, healthier patients as subjects for tests.
Data pigeon holes