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This critique completely misses the boat. The author explains why HealthKit will likely never share data from an EHR via some sort of HIE. She's right, and that
by ryanmarsh 12y ago
This critique completely misses the boat. The author explains why HealthKit will likely never share data from an EHR via some sort of HIE. She's right, and that's not the point. Doctors (usually) do not trust health data collected by a patient, patients however are interested in collecting data for themselves. Look at this through the eyes of someone with a chronic disease like T1D or cancer. The more studious among us collect reams of data for our own comfort and understanding, occasionally it is useful to a doctor.
When my daughter had cancer, the doctors didn't come to me for the results of her last CBC, they looked in their own computer. No doctor would have trusted my interpretation or recollection a CBC anyway. My wife and I did track those numbers very closely, and we did so that we could make day to day quality of life choices for our daughter. These choices usually did not involve a doctor.
Oddly enough there was a kind of data that originated from us that the doctors did rely upon. When you're dealing with a disease that has a 30% (or less) survival rate it's unsettling how often you hear a doctor say "we've never seen that happen before", especially when you are hearing it from the top doc in the country for that disease. During our multi-month hospital stays my wife and I traded off in shifts collecting information at 15 minute intervals of everything that went on with our daughter in the hospital room. Often times the situation was very dynamic and the nurse was obviously not standing at the bed side 24/7, and the doctors usually did rounds only once a day. Additionally the nurse's acute care flow sheet only tracks a handful of very specific data points. What we discovered was that while the doctors took oral anecdotes with a grain of salt, when they saw I had written notes they got into the habit of simply asking for my notes and then wrote down what they needed and then our discussion of her state began from there.
I apologize for the messy stream of consciousness here. While I'm not a health care professional I've invested a considerable amount of time learning the inside of hospitals, and I've also built a handful of software products for the healthcare industry including a proprietary HIE. If I learned anything from those experiences it's that there is data the doctors want, and there is data the patients want, and they don't always overlap and they don't always trust each other. If there's going to be a revolution in patients taking ownership for their health information, care plan, etc... it's going to start with the patients collecting the data for themselves through various devices and manual means and it will not be the results of scans, labs (or imagine this... HIV test results) being streamed to the patient's phone from the hospitals EHR.
- x0054 12y ago> The author explains why HealthKit will likely never share data from an EHR via some sort of HIE. She's right,.... I might be wrong, but I do believe the author, Jared Sinclair, is a guy. It's funny how we see "nurse" and we instantly think "girl." I thought that too. But than I thought "programer=guy, but nurse=girl, does not compute!" So I checked the name on the article. I don't mean to critique, as those who live in glass houses should not throw stones. Just found it interesting how ingrained those stereotypes are.
- TazeTSchnitzel 12y agoTheir avatar suggests they are male, too.
- pdpi 12y ago"At the risk of sounding like that guy" kind of gives it away ;)
- deleted 12y ago[deleted]
- ryanmarsh 12y agoYou are right. It's too late for me to edit my comment so the error stands.
- tptacek 12y agoThis is a great comment. Thanks for writing it.