Hey Patients, You Should Want to Pay for Medical Record Storage!

Portability

If a patient is over thirty, they’ve probably had to move from one physician practice to another. This might be due to a change in health coverage, a relocation, a retiring physician, or just an opportunity to have a preferred healthcare provider. IThese people know how difficult it is to get health history from one practice to another. This is traditionally a paper-based operation. The transfer often requires patients to pay a premium. There’s a delay in physically transferring the information and there are no guarantees that the information is transferred in total.

Accuracy

There is risk in nearly all of this and there is a better way. The duplication process might not work well. Records might be illegible. A new physician might need to understand a medication history to avoid a dangerous interaction. And valuable information may simply be lost.

Availability

There are strict guidelines on how long medical records must be stored. However, the guidelines don’t necessarily define what records must be stored and in what format they must be stored. For instance, if you were a victim of Reye’s Syndrome as a child and were lucky enough to survive, the images taken at the time may be destroyed even if the the diagnosis was retained. That’s not terribly comforting when you find out years later that an irregularity has been found in your brain and you have no idea if it was there from when you were a child.

Those colorful folders in a doctor’s office are no match for electronic records. I am fortunate to have a physician that is diligently migrating to electronic health records. Even so,  I have to wonder what surprises my folder contained that were never transcribed. Was it scanned? Is the scan legible? My father was a physician, long since retired, and for a decade or so, he kept his patients’ records safe – just in case he got a call. It was an expense he accepted and was diligent. I’m not so sure all practitioners are as diligent.

Storage Solutions

Cloud computing is being adopted quickly at many levels of health care. Currently, raw data from EEG, MRI, DNA sequencing and all manner of potentially helpful information is being recorded, stored and locked away in Hospital Information Systems when it could be centrally stored and accessible. Traditionally a patient might have the option of receiving a copy of one of these studies. I always request a copy for any test and often get a DVD for a small price. I store it away with the rest of my health records. Maybe someday I’ll need it. Hopefully I won’t. But even my records are starting to get physically big to store. And what if my house is flooded or burns to the ground? It is time to be smarter about health records. Tools such as Google Health or Microsoft HealthVault could be key.

The Risks

There are open issues that need to be addressed. Data will have to be stored and retrieved in its native format. If not, there is risk that data will be lost or portability will be difficult due to file formats. There will have to be tools to visualize all the data. An MRI is stored in a standard format called DICOM. EEG data, on the other hand, might be stored in many formats including proprietary formats only readable by the manufacturer of the EEG acquisition device. The manufacturers must be paid for those readers or standardized formats must be enforced. If they are, there must be a controlling international body.

Escrow of the data must be held. If the company that is storing your data goes out of business, you must be able to retrieve your data and move to a new vendor without penalty. And data must be protected as much as possible from unauthorized access. With today’s cyber attacks, this is a daunting problem but one we should be able to address with complex encryption schemes.

The Benefits

Medical care will continue to advance at a remarkable pace. New products are being developed to improve people’s quality of life, longevity, and cure disease. Many of these products produce reports as well as physical measurements. We don’t know how much of this might be valuable in the future. Wouldn’t patients rather have this information at their fingertips, or more accurately, at their healthcare provider’s? Wouldn’t they rather control its access and know who can see it?

Storage costs money. It’s a simple fact. The storage has to be reliable, accessible and accurate. Patients must be able to grant access to whomever needs the information and protect it from those that do not. If they wish to be altruistic, perhaps patients might share this information (anonymously or not) with the scientific community or with advocacy groups.

Take Responsibility

The back of a closet won’t meet these needs. Patients must recognize that this is their information. They should control its distribution and own it. Further, they should have the best possible product housing those data. It should be safe and redundantly stored. It should be tamper resistant, if not tamper proof. The market should drive the best solution and patients should be willing to pay for this incredibly valuable service.


Andrew Dallas is president & CTO of Full Spectrum Software Inc.