I'm concerned that the speeding bullet of genomic discovery is going to outpace our ability to keep up with the demand for tests and our ability to fold the results and knowledge back into the EHR for consumption at the point of care and the process of delivering care.
This quest for "personalized medicine" seems like a supply chain of data-- i.e., Are we generating the data content in the machinery of healthcare to enable the production of personalized medicine? In my limited brain, the supply chain of data includes these data types and sources:
• Patient demographic data (Registration, patient reported, etc.)
• Clinical treatment data (Epic, Cerner, pharmacy, claims data, etc.)
• Clinical outcomes data (Epic, Cerner, pathology labs, diagnostic labs, other diagnostics, patient reported outcomes etc.)
• Familial data (Patient reported)
• Biological data (Labs)
Yesterday, at a demonstration of Xenobase at Childrens Memorial Research Center, as I was walking through this mental checklist of supply chain data content and sources, a couple of things struck me: (1) If I wanted my genome analyzed for inherited disease tendencies, I wouldn't know who to ask at Northwestern for that analysis; and (2) I didn't know if our hospital labs were running those tests or not and whether that data was somehow making its way back into our Cerner or Epic EHRs, or our Enterprise Data Warehouse. However, I do know that the Northwestern Core Genetics lab can run the tests... but how does that data make its way into my EHR? I can have commercial organizations like www.23andme.com run a personal DNA analysis... but I wouldn't know what to do with the results if they indicated a genetic risk of disease, nor would I know if I should trust the results, in any case.
