How many patients have taken on the project of digitizing their personal health records? My guess is not many. Most people who have bothered to collect and manage their healthcare information are more likely to have a large box somewhere at home stuffed with lab reports, hospital discharge instructions, and receipts for care, but have not bothered to take the next step.
Of course, there are small and large vendors out there who can help. And some health insurers and employers also offer assistance through consortium groups like Dossia. However, a lot that information is derived from claims data, which doesn't always provide a complete picture of the patient either. Sometimes, the data suggests that blood work was done, for instance, but in fact it was ordered and paid for, but no results exist in the file.
Under the HITECH Act and HIPPA regulations, clinicians are supposed to offer patient copies or electronic access to their medical data, which could be used to populate a PHR. But for the most part, that's being achieved through patient portals. And while portals can be convenient for patients, unless the individual gets all his or her care from one affiliated group of providers--like a Kaiser Permanente, for example--it's still unlikely that the patient information will be complete.
So, what are patients to do if they want to create and manage their own complete e-health record? Too often it requires they supplement information already available in PDFs or images of scanned documents with a mish mash of assorted information from paper records. That scattered collection of information then has to be manually entered into the e-PHR. That's a lot of work. And if the patient is elderly or suffers from a serious illness that's driving him or her to gather all the information in one place, it may be too much.
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