Patients: Take back your health information. Here’s how.

Have you ever wondered why your personal health information essentially belongs to your health care provider or institution? I mean: why do they keep your information under lock and key, and you have to sign a release to get it? After all, it’s your blood that they just pulled out and tested, it’s your body they just shot up with X-rays or operated on — and you paid for these services.

So, why does all of that information remain primarily in their control? Well, I think there are several reasons — mostly related to control — but that’s not the point of this article. The point of this article is to envision a different and much better system of health information.

Take a moment, step back, and imagine this: that all information generated concerning your health (from birth to death) automatically belongs only to you, that you are the primary steward of that information, and that you, or those whom you appoint, are the only ones who can choose to share it.

All of your health information is conveniently stored within a secure cloud-based electronic personal health record (ePHR, “EE-fur”) that serves as a clearinghouse for all personal health-related data for your entire life. That is, whenever you go to a pharmacy, for example, the pharmacy submits a standardized electronic document reporting your prescriptions to your ePHR (i.e., date, medication, quantity, indication, etc.); whenever you get blood work, the laboratory submits a standardized electronic document reporting your test results to your ePHR (i.e., date, type of sample, results, reference range, etc.); and whenever you have an X-ray, operation, biopsy, clinic visit, therapy, etc., those providers also send your information (radiology report, image files, operative report, pathology report, clinic note, etc.) to your ePHR. All of this information immediately belongs to you and is quickly and forever available to you online.

But that’s not all.

Your ePHR is artificially intelligent. It doesn’t just store random data. It systematically organizes it in a clinically logical way, highlights and categorizes abnormalities, graphs trends, summarizes findings in a digestible format based on clear diagnostic criteria.

This system creates active recommendations (or prompts) for potential further testing, follow up needs, risk reduction, education or preventive care based on your age, gender, past history and results of previous testing.

Your ePHR is an unbiased, logical, intelligent, unrushed, “traveling” adjunct primary care provider who always has your back. Perhaps best of all, your ePHR is not shackled by a forced focus on generating RVUs, billing or coding, like your human doctors are. So it can focus solely on pathophysiology, differential diagnosis, treatment, prevention, potential drug interactions or side effects, lifestyle recommendations, and education. It links you to support groups, clinical trials, new treatments, and educational material.

In this new world, the ridiculous and burdensome need to “request records” and repeatedly gather and fax innumerable disorganized and unnecessary pages from one health care silo to another is gone. Redundant testing is eliminated. You, as an individual, simply grant access to custom-selected data within your ePHR to any health care provider you choose, and you set specific criteria for sharing (data types, categories, dates, and duration of access permission). Alternatively, your provider sends you an electronic request for specific health-related data they need prior to your visit — information which is downloadable once you approve the request.

In this new world, the crippling non-interoperability of EHRs dissolves because the universal ePHR sets the standard for data format. Input and output file formats are standardized, and all EHRs thus use, directly or indirectly, the universal data format of the ePHR.

For an acute change in health, your ePHR gathers a “smart” review of systems (ROS) from you, based on a chief complaint, which you submit to your physician to facilitate management and save time.

De-identified data across the nation from the ePHR is used to rapidly identify disease outbreaks, trends, and epidemiology of certain diagnoses, adverse reactions to new medications and opportunities for participation in clinical trials. Progress and efficiency in health care accelerate dramatically.

Now, return to our current world of health information where we are forced to admit that the typical efficiency, accuracy, and appropriateness of health care delivery is far below the standards of other competitive industries.

The so-called shortage of doctors is a soluble problem with an ePHR because, ultimately, the greatest value of physicians is their ability to make proper clinical decisions given certain clinical findings. The rate-limiting step in this process is often simply gathering the information needed to make such decisions, and your ePHR can quickly generate an organized summary of your health history (simultaneously from all current and past points of care). It can identify associated deficiencies in testing or treatment, which can subsequently be used by your physician to make more efficient, accurate, and appropriate decisions.

It seems like common sense, so why hasn’t it happened yet? First, market forces incentivize health systems to keep your information tightly within their own network because it tends to keep patients within that particular network (“All my records are there, so I should go there.”). Second, EHR developers benefit from non-interoperable EHRs because it prevents health systems from easily switching to a competing EHR. Third, an ePHR cannot easily be monetized. If an ePHR becomes a universal requirement (i.e., everyone assigned a social security number automatically gets a free ePHR, provided by a federally-funded private entity), there’s no revenue stream. To maintain the integrity and purity of the ePHR, direct marketing would be forbidden.

You may say: Where have you been? We already have patient portals! But this is not the same as an ePHR. The ePHR belongs to you, not the health system. The ePHR receives data from all health care encounters, not just the particular health system that owns the portal. Some may tout RHIEs (regional health information exchanges) as the answer. Once again, these are only regional, and they are not patient-owned.

Similarly, a national electronic health record is not the answer either because it is not patient owned. The government doesn’t need to have our health information without our permission. Security is also always a concern that is raised, but a privately-based ePHR should be as secure as your online bank account.

The devil is in the details, but as they say, we put a man on the moon, didn’t we? So, take back your health information, America, by promoting a national ePHR.

David M. Mitchell is a hospitalist.

Image credit: Shutterstock.com

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