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Devoted to the topic of data specification (including data organization, data description, data retrieval and data sharing) in the life sciences and in medicine.
Imagine this scenario. You show up for treatment in the hospital where you were born, and in which you have been seen for various ailments over the past three decades. One of the following events transpires:
1. The hospital has a medical record of someone with your name, but it's not you. After much effort, they find another medical record with your name. Once again, it's the wrong person. After much time and effort, you are told that the hospital has no record for you.
2. The hospital has your medical record. After a few minutes with your doctor, it becomes obvious to both of you that the record is missing a great deal of information, relating to tests and procedures done recently and in the distant past. Nobody can find these missing records. You ask your doctor whether your records may have been inserted into the electronic chart of another patient or of multiple patients. The doctor does not answer your question.
3. The hospital has your medical record, but after a few moments, it becomes obvious that the record includes a variety of tests done on patients other than yourself. Some of the other patients have your name. Others have a different name. Nobody seems to understand how these records got into your chart.
4. You are informed that the hospital has changed its hospital information system, and your old electronic records are no longer available. You are asked to answer a long list of questions concerning your medical history. Your answers will be added to your new medical chart. You can't answer any of the questions with much certainty.
5. You are told that your electronic record was transferred to the hospital information system of a large multi-hospital system. This occurred as a consequence of a complex acquisition and merger. The hospital in which you are seeking care has not yet been deployed within the information structure of the multi-hospital system and has no access to your record. You are assured that the record has not been lost and will be accessible within the decade.
6. You arrive at your hospital to find that it has been demolished and replaced by a shopping center. Your electronic records are gone forever.
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