Do you know what is in your medical record? I don’t mean dry lab values or x-ray reports. I mean your doctors’ interpretations of those things, along with intimate, personal details like the results of your physical examinations and their impressions of your adherence to medications and home environment. The information is about you, but it also belongs to you. But it wasn’t always available to you. The 1996 Health Insurance Portability and Accountability Act (HIPAA) gave patients the legal right to review their medical records. But few lay people other than medical malpractice attorneys knew what to do with the information. 

And electronic health record (EHR) vendors have historically treated your data as proprietary, in spite of whatever HIPAA had to say about it. The data was treated as the EHR vendor’s property and was difficult to transfer from one health record to another. Stopgap measures like the Kansas Health Information Network popped up to try to make the data transferable from one hospital or clinic to another. But even this was suboptimal. Compare your experience with your health data to your experience with your financial data, which is probably almost as sensitive. You have undoubtedly used your ATM card from, say, Intrust Bank, to check your balance at, for example, a Fidelity ATM. We take it for granted, just like I take for granted that my USB drive from my home Mac computer will plug into my work PC. I don’t have to rely on the substantial expertise of a middle man to know that the data will transfer.

Since the 1990s several experiments have led to a movement for patients to have ready access to their doctors’ notes, be they on paper or in an electronic format. The best known organization goes by the name “Open Notes.” Now, new federal rules stemming from the 21st Century Cures Act aim to promote further patient access to their electronic health records via secure online “portals.” With a few exceptions, starting April 5, 2021, clinical notes and much other electronic information must be made available free of charge to patients. And the new rule forbids health systems or electronic health record vendors from “information blocking,” the practice of treating electronic health data as a proprietary asset and restricting access. The Annals of Internal Medicine (paywall) has a nice infographic:

To help folks transition to this new world, I think employers, insurers, and health care providers need to be proactive. To start, we should encourage our patients or employees to find their health record and to discuss it with their treating practitioner. Medical records are teeming with mistakes, due to cut-and-paste, poor user interoperability, and old-fashioned errors. Patients who find these mistakes shouldn’t run straight to the nearest malpractice attorney. Instead, both the patient and the doctor might be enlightened by a discussion of what should have been in the note.

Second, we should teach our employees and patients that what is in the record is meant to be objective. It is not a subjective judgement of anyone’s value as a human being. When I was in full-time academic practice, I remember a colleague being berated by a patient for noting that the patient smelled like urine (because she did, objectively, smell like urine). But once the patient’s embarrassment over reading the note faded, she was able to have a very meaningful conversation with her doctor about her urinary incontinence, and she was prescribed a medication that helped tremendously. Without access to her record this may never have happened. 

Finally, we need to remind patients that their record is truly private. In the era of predatory social media companies we’ve largely given up on the idea that any of our personal information should be private. But Facebook is probably not the best forum in which to litigate disagreements with doctors or nurses or to share screenshots of one’s medical record.

As the Medical Director of the Kansas Business Group on Health I’m sometimes asked to weigh in on hot topics that might affect employers or employees. This is a reprint of a blog post from KBGH.