Already collected on our Electronic Health Record are not necessarily medical details of our lives such as alcohol consumption, tobacco use, race or ethnicity, and residential address. Now IOM (Institute of Medicine) wants to add other self reported data. Suggested categories are educational attainment, financial resource strain, stress, depression. Physical activity, social isolation, intimate partner violence, and neighborhood median household income. These were the eight categories chosen but there are others under consideration.
Social scientists on the committee believe the new data domains are linked to health or longevity but clinicians and medical practitioners were concerned with how the information would be collected and stored. Unfortunately the report did not take these issues into consideration. There are two problems with the proposed additions: 1. The data would be self-reported. And 2. Securing the information in our EHR is becoming burdensome and worrisome.
The plan already is to link the EHR data to local health departments and community agencies. While this may be beneficial to identifying problems like environmental exposure to pollutants or recognizing the effect of housing concerns or lack of adequate nutrition on patients, it does expose our intimate life details to a growing network of government agencies. Is it much of a leap to think information could be shared with local law enforcement agencies too? Furthermore, is it already factored in that we are going to fudge the facts when reporting our less desirable qualities. Will I exaggerate my educational achievement and under estimate how much wine I drink? Does having a higher income guarantee better health? I wonder how my neighbors are going to take it when I go door to door asking what their household income is? Without polling the neighbors I wouldn't have a clue how to answer that question!
Maybe it is none of my business. And not the business of my medical practitioners, local health departments and community agencies.
The IOM is an independent, non profit organization that works to provide unbiased and authoritative advice to public and private entities. Many studies are requested by government agencies but the IOM is not funded by the government.
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