Patient Access to Personal Medical Records in the Digital Age

Several major changes in modern healthcare have resulted in both the demand and the need for patients to have total access to their medical records. First, consider that in bygone days, you would have generally seen a single pediatrician as a child, a couple of primary care physicians as adult (largely dependent on whether you moved away from town), and then an obstetrician or possible a specialist such as a surgeon to whom your general practitioner would have referred you.

Now, just a change in employment will trigger the need to get to know a whole raft of new physicians and referral networks that you must traverse in order to get care. Hence the requirement that your prior medical care records be transferred, even frequently, is the norm for the day. Once upon a time, these records were copied, packaged, and mailed to the new physician, but in the digital age, they are potentially available immediately.

Second, the advent of electronic medical records, coming as they do in all shapes, sizes, and degrees of completeness, has created the demand that they be instantaneously available not only to doctors and hospitals ( “providers”, in modern parlance), but also under the auspices of the federal HIPAA legislation, to you as a patient.

In many states, ownership of digital information is technically the doctor’s or the hospital’s, but physical possession is a moot point. The average patient in our current system needs and wants access to the entire record across all providers.

One of the positive benefits of your access to physicians’ records is that errors can be corrected. If you can identify incorrect information that has been put into a record by the physician, it can be fixed, thus reducing the likelihood of clinical errors. Many believe that patients will be better enabled as ‘partners’ with the physician in managing their care. To the extent that patients have an understanding of their health history, symptoms, and diagnoses that is truly a great possibility.

The reality for many physicians however, is that they have many patients who have no intention of becoming ‘partners’ in their care, and conversely there are physicians who don’t want to ‘partner’ with many of their patients. (Out of deference to the saintly intentions of most physicians who are trying to help their patients, it must be said there are many hypochondriacs, huge resource users, drug seekers, and simply demanding patients who would make horrible ‘partners’ with their physicians).

In the age of the internet, many patients suddenly become self-styled experts on their medical diagnoses and conditions, which in most instances can be a good thing. That said, information culled on the internet does not magically accord knowledge, and certainly does not accord the wisdom that comes only with a physician’s training and experience (to be sure, not every physician arrives at a state of excellent knowledge and deep wisdom for all the medical conditions that they see).

But for every case that a patient was able to diagnose themselves using information available on the internet, there are legions of examples where the information the patient brings from the Internet to the doctor is simply wrong, or at best, irrelevant to the patient’s problem. Most physicians incorporate the patient’s presentation of internet information into the patient’s medical record with commentary on their opinion as to its applicability to the patient. Will patients now insist that all the material they bring to the physician’s inquiries be made part of the record? The size of the records is thus increasing at a dramatic rate. This is not a storage problem, which is merely a technical problem, but it is a very significant problem for physicians who have even less time than ever before to go through details of prior medical records.

Another problem arises because many patients prevaricate when relating their histories to physicians, ignoring a physician’s honest request for accurate information about their previous medical problems, especially in the areas of alcohol or drug use, or other important health history areas, such as risky behaviors. If patients now have access to their medical records where they find references to the physician’s suspicions about them in these areas (a physician’s suspicions, taken broadly, guide the direction and type of diagnostic work-up), will patients demand that these medical thoughts and uncertainties be expunged from their charts?

Will patients demand that a physician change the record? This will be a big problem, not in the least because of the time required to do so, but because in our current era of zealous malpractice litigation, any post hoc change in a chart is practically an admission by the physician of malpractice guilt. Will patients become angered by reading all that a physician has written about them and bring malpractice litigation against a physician? Will unstable patients “go postal,” storming into doctor’s offices angered by remarks written by a physician in their record that have become part of the physician’s medical decision making process? The fact that modern patients have little long term connection with their physician will likely exacerbate this problem.

If portions of a medical record or chart are altered at the request of a patient, assuming that the information is nothing the physician can or wants to “prove,” will the completeness of the medical record be diluted?

On the whole, a new era of patient access to medical records will change the nature of physician documentation, probably for the better. However, much of the “art” of practicing medicine which in the past can be conveyed from one physician to another in referrals and transmissions of records, reflecting the physician’s musings over a patient’s condition, will go by the wayside. We will tend towards technically accurate, cold clear facts, pared down lists of differential diagnoses, and records will leave out details of emotional and psychological aspects of the physician’s assessment of patient problems, simply because these areas are too ambiguous and potentially damaging if a patient’s relative (eg. wife, husband, child, parent) gets a hold of them or because the patient themselves may be harmed by the physician’s consideration of a differential diagnosis or medical decision making.

We are rapidly sailing into uncharted waters.