There used to be a controversy regarding who owns the medical record, you or your doctor/hospital? It became a growing conflict at EMRs and HIT developed. Paper was king, you copied it, faxed it, spindled it. burned it, and shredded it when it was no longer needed.
The conclusion in the past several years shiftted; the patient owns his data, not the medical software. The most recent iteration is that the software is separate from data fields and/or EMR information.
In a paper world it would look like this: If you want your data, copy it, and the new copy is yours !
That seemed fairly clear cut in clinical encounters.
This TEDMED video illuminates other challenges regarding medical data used in clinical situations encountered in Clinical Trials.
Amy Abernethy at TEDMED 2013
Should patients be able to share and/or donate their ‘data’ just like blood donors give to a blood bank.
Can we develop software to support these options? Let the patient control how much, who, and where the data should be sent. Make permissions rescindible
Blood drives,,info-drives,, the infomobile,
Information networking is critical from the patient perspective.
Give our Data a Second Life