EHRs and patient access: 'My body, my record' or 'The doctor knows best'?

As electronic health records (EHRs) continue to become more commonplace in healthcare provider organizations, the healthcare industry finds itself in a fairly heated debate about personal health records (PHRs) and the appropriate level of patient access to medical records. Maintaining accurate and secure data is one of the industry’s top priorities and with the continuing shift toward EHRs, physicians and patients must find a balance between patient access rights to personal health data and physicians’ rights to create the definitive medical record and keep certain information private.

On one hand, patients want to be involved in the electronic exchange of information, and allowing patients to engage with their electronic records may even improve their quality of care. For example, a recent study at Brigham and Women’s Hospital found that allowing patients to have access to their medical records actually lessens the number of discrepancies in medication regimens by .05 percent. Researchers felt that PHR systems encouraged patients to review their medications, which helped to highlight any inconsistencies, and also led to discussions about medication adherence and potential side effects. While patients lack the training and expertise of physicians, they are in a unique position to be of help, and are -- or can be -- highly focused on their own treatment regimens and subsequent health outcomes.

An informed and proactive patient can be the most diligent proofreader for his/her personal health information. While both patients and physicians see value in electronic information sharing to enhance the patient-provider relationship, many physicians are still wary of opening up full access to PHRs, particularly physician notes. For example, a recent study reported that more than 80 percent of doctors believe that open sharing of physician’s notes would make patients more prone to hypochondria and self-diagnosing. It is also worth noting that physicians are legally protected from sharing their personal notes.  Additionally, nearly all physicians will tell you that they will discount entirely any medical record that can be edited or amended by the patient – some systems clearly flag such information, but even its presence is enough for many physicians not to want to deal with it at all. In their busy world, they simply don’t have time to sort through “trusted” and “non-trusted” information and evaluate the relative merits of the different information sources.

Physician notes remain one of the greatest points of contention and dispute in terms of patient access to PHRs. For those patients who want access to their whole record including patient notes, the resounding mantra is, “my body, my record.” Personally, I tend to fall on the “full access” side of the fence, with the possible exception of psych notes. But I believe it is worth understanding the positions of both patients and physicians.

From a physician’s perspective, patients occasionally embellish or obscure the truth, omit specific details or draw conclusions that are simply misinformed. Many patients don’t want to share or fully divulge information about drug use, sexual activity, medications or…you get the picture. Therefore personal physician notes are often taken based on intuition or suspicions so that the provider can remain aware and continue to track suspect activity or outcomes. What if a physician suspects that a patient constitutes a suicide risk, and the patient then reads that note on his/her PHR? This is clearly an extreme example, but certainly realistic. The bottom line is that making this information available could be detrimental to a patient’s health and may also open the physician up to liability.

As with any ongoing debate there is of course a flip side to the patient access coin. From the patient perspective, what if the physician’s assumptions are incorrect and the patient’s care is suffering as a result?  Suppose someone experiencing extreme anxiety or pain went to the doctor seeking treatment, and the physician pegged him as a drug user/seeker and denied him medication he truly needed. In this sense the patient having access to the doctor’s notes would allow him to either confront the physician or seek a new provider.

Currently, I have to proactively request a printout of any personal health documentation from my physician’s office. (Meaningful use will soon require this level of patient access without request.) This is quite inconvenient and does not foster patient-provider collaboration nor inspire active participation in one’s healthcare. Regardless of the inclusion of physician notes or not, patient portals are excellent tools that allow patients to log in remotely and access their medical records. While patient portals are becoming slightly more common in IT-progressive provider organizations, for most patients access is still highly limited. The most frequently used features of such portals, from what I have understood, are appointment requests, prescription refill requests and online bill payment.

But on this point, we should consider the types of portals to which a patient can have access. The first is set up by the patient's primary care physician, attached to the ambulatory EMR. This generally has a high level of trust and interactivity with the patient, coming as it does from their most trusted source of health information. Another is a portal offered by a payer as part of an employer-paid insurance program. While nearly all of us with commercial insurance have access to such a portal, very few actually use it. Another category is patient-owned and managed PHRs (which are not really “portals” in the strict sense unless you allow for the semantic differentiation between “tethered” and “untethered” portals). These are well accepted by those who use them, but unfortunately few use them because of the tediousness of getting data into them in the first place – automatic population of a separate PHR is a distant vision that will likely have to wait until the health IT landscape is seamlessly integrated and standardized.

I know that when it comes to EHRs, the “patient access” debate is like an onion with many layers of issues, all worthy of serious consideration. I am sure that this post has merely scratched the surface of the outermost layer.  Given the magnitude of this issue I would welcome the chance to peel back additional layers and delve further into the “patient access” debate with PhysBizTech readers.