How Much Would You Pay for Your Medical Record?

I recently had to request my medical records from former physicians and have them sent to a new specialist I’m seeing. It is incredibly important for me that my new physician has a comprehensive perspective of my health. I truly believe that if he doesn’t have a complete picture, his decisions may not consider the context of my condition, and my lifestyle and personal will as a part of the solution.

Being in healthcare IT, and inspired all the time by the optimism and the opportunities technology has provided us, I thought that collecting my personal health information would be a fairly simple and straightforward task. Instead, the wide range of service I was provided when simply trying to collect my medical records was quite an eye opening experience.

For example, when I called to request my medical records from my allergist, there was no hesitation, no questioning and no fee. Simply, where and when do you need it? Kudos to my allergist! What was even more convenient was that my allergist had an EMR and secure email capabilities. This meant that when they sent my new physician the records, they could copy me on the email and send me an attachment of my own records. Of course, my reaction was, “This is great!”

On the other hand, one physician from my home town wasn’t as generous. They firmly told me that I was required to pay a fee, regardless if the records were for personal use or for another physician. (I encountered this exception for a number of my physicians.) Moreover, everything with this physician had to be handled by fax or ground mail because they do not have an office email address.

The differences between these two experiences were startling. Of course, most of the other facilities I needed records from all carried their own varying levels of inconvenience, whether that meant getting a “real” person on the phone to help process my request to simply getting the release form signed and returned. I’ve been working on this project for two weeks now, and the only records my new physician has to date are from my allergist. That is a problem.

Following a great deal of reflection, I realized that my problem wasn’t with the fee required for access to my records or the inconveniences I would have to endure as a patient just to get my information. These complaints are superficial. Instead, the problem for me stems from the obvious inconsistencies between physician offices. Why was my experience collecting my medical records simple at one office and yet so difficult at another?

It seems as if no one, neither patients nor physicians, are truly “certain” as to how much personal health information should cost. Historically, it seems the owner of the data has been the physician because of convenience. The physician is the primary user of patient data, so it makes sense that they maintain the access to it, right?

Who “owns” the data?

During the #HITsm tweet chat on Monday evening, we explored this question a bit. Who owns the data and for whom does that data benefit? We discussed a number of variables during that conversation, and concluded as a group that the data is in fact the “property” of the patient. As one participant suggested, “It’s my data. I shouldn’t have to pay for it.”

Keith Boone communicated a noteworthy perspective during the conversation as well, and suggested that the data, or information, belongs to no one.

“With all due respect to patient advocates who claim ownership of the data, I don’t see this enshrined in law, nor do I think “ownership” should be.  The challenge to think about are the needs of providers, who collect and organize this data to run their practices. The existence and organization of that data is essential to their practice.  Could you imagine the merger, acquisition or other disposition of a healthcare provider practice where the data they used to operate didn’t go with the business?  Would that benefit patients?  Almost certainly not.”

What price is the right price?

If the owner of data doesn’t have regular access, or doesn’t exist at all, how much should one pay to access patient records? One perspective on the issue is that the cost for care paid in the past should include the cost of the data collected from the visits. Therefore, the information should be accessible for no additional fee.

HIPAA regulations certainly offer some legal guidelines regarding the price one should have to pay for their own medical records. “Center on Medical Record Rights and Privacy,” published by Georgetown University, offers a detailed outline of patient rights regarding their medical record access:

“Will I Have To Pay for My Medical Record? Maybe. Generally, health care providers may charge you a reasonable, cost-based fee for copying your medical record. The fee can include the cost of supplies and the labor for making copies. Your provider can also charge you the actual cost of postage if you have the copies sent to you.”

The document also offers the following guidelines for paper copy costs:

Next Steps

In our current system, the physicians maintain control and maintenance of personal health information. Because the physician takes some ownership of the data, there are great differences regarding the value they assign to access that information. We must find a way to minimize personal health record access differences between physician offices.

Meaningful Use is providing the incentives, framework and methods by which health care providers and vendors can usher in the widespread use of EHRs. Also, much has been written about PHRs and the roles and responsibilities of the patient in the new world of health care. Much more is expected of “patients as consumers”. Patients are being told to be more educated, engaged and responsible. I think those calls are justified, and passionately believe in the movement to empower patients to be true partners in their own health care. I also believe in order to achieve this, that there cannot be disincentives to becoming engaged. (I.e. resistance to providing medical history, widely varied fees for documentation, etc.)

What is the solution? More rules? Differing laws based on specialty, practice size or state? I don’t have those answers right now, but I do know that the era of Meaningful Use will need engaged, empowered and informed patients to fully succeed. I also know change comes slowly and that I need more patience… sometimes.