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Should Patients Be "Allowed" to Read Their Medical Records?

Posted Aug 03 2010 12:00am

First of all, let me dismiss the idea that there is much room for debate about whether patients should be allowed to review their own medical records. HIPAA gave them the right to read, and even amend, these records years ago. Whether this is a good idea is being addressed in an ongoing study (see: Should Patients Read the Doctor’s Notes? ). Regardless of whether it's a good idea, I don't think that the law will be reversed on the basis of one or more current studies. Below is an excerpt from a recent article discussing this topic:

In 1996, despite ...concerns [about patient access to their own medical records], the Health Insurance Portability and Accountability Act, or HIPAA, gave all patients the legal right to read and even amend [these documents]. At the time, a group of national health care experts hailed this new transparency as a necessary component of better and safer care. But today, few patients have ever laid eyes on their own records. And those who try often come back from their missions with tales of bureaucratic obstacles, ranging from exorbitant copying costs to diffident administrators. The same concerns from 40 years ago come up again and again, with little evidence to support or refute the claims of either side. Should medical records be shared as interactive documents between patients and physicians? Can transparency work, or will it end up worrying patients, muddling the patient-doctor relationship and adding more work to an already overburdened primary care work force?....This summer, researchers have begun the largest study to date of open access, aptly named Open Notes , involving over 100 primary care physicians and approximately 25,000 patients from three health care centers....In the study, patients who have just seen their doctors will receive an e-mail message directing them to a secure Web site where they can view the signed physician notes. Patients will receive a second e-mail message two weeks prior to any return visit, reminding them that the notes from their previous visit are available for review.Over the course of the yearlong study..., the Open Notes investigators hope to analyze the expectations and experiences of patients and physicians, as well as examine the number of additional phone calls, e-mail messages and visits that may arise as a result of more patients viewing their doctors’ notes....“We have one simple research question,” said ...a lead investigator [in the study]. “After a year, will the patients and doctors still want to continue sharing notes?”

I believe in the maximum amount of transparency in the delivery of all services and most particularly healthcare where so much can be at stake. This general principle certainly applies to physician office notes as well as inpatient records. It also applies to diagnostic reports including those from the clinical labs, pathology, and radiology. Replicating most clinical information from office and hospital EMRs to a secure web site is an efficient way to achieve this end and is referred to above in the Open Notes system.

Are all types of medical communications understandable to patients? Certainly not. However, having access to diagnostic reports, for example, would provide patients with an incentive to research various topics on reliable web sites and more fully engage in their own care. It would be reasonable for the hospitals themselves to provide their patients with a list of vetted web sites that can help explain the interpretation of lab tests and imaging studies.

What about the myriad and ever-changing abbreviations used by physicians in medical records? I believe that the elimination of such abbreviations is long overdue. Their use is a vestige of a former time when hospital chart notes were laboriously recorded by physicians in longhand. The vast majority of such notes are now generated using office and hospital EMRs. Such notes can now frequently be generated quickly by stitching together phrases from pull-down menus. Accommodation should always be made for free text entries but this will generally be the exception rather than the rule.

What about the discussion in the record of ultra-sensitive issues such as the diagnosis of malignant disease or end-of-life issues? I think that such topics can be sequestered in special sections of the hospital EMR but with patient/family access, by default, after some predetermined period of time. This automatic release of sensitive information to patients and family will serve as an incentive for the medical staff to effectively and expeditiously communicate with them about serious health decisions and issues.

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