On trying (still) to access one's health data electronically

Despite emphasis on patient engagement, even the most committed patient can have trouble getting records
By Michelle Ronan Noteboom
01:58 PM
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A few months back, I shared my struggle to obtain copies of my daughter's and my medical records. Initially I had made my requests through the doctors' portals and/or websites. Overall the results were disappointing, primarily because a couple of the providers never responded to the requests.

Since then I have sought assistance from a couple of "professionals," namely apps listed on the GetMyHealthData site. I intentionally only selected apps that were free and that would request copies of my records on my behalf.

[See also: How hard is it to 'Get My Health Data'?]

In mid-August, I tested one of the apps to request records from my primary care physician and gastroenterologist. Initially I entered my date of birth incorrectly so the requests were rejected. After fixing the date, the requests were resubmitted at least two more times. To date, nothing is showing up online in the app, so either the providers never sent the records, or, the records were never uploaded into the app.

My luck was a little better when testing the second app. This time I requested records from the primary care physician, my gynecologist, and my gastroenterologist. The PCP and gynecologist both provided completed records within a matter of days. Six weeks later there is still nothing showing up for the gastroenterologist.

With at least a couple of records in hand, I have begun to give them a closer look. A few observations:

  • My records were either scanned or faxed into the app, rather than electronically uploaded. As a result they are a bit difficult to read. Furthermore, it looks like the lab had faxed results to the gynecologist, so those lab results are pretty much illegible.
  • The records contain a few errors, though none appear too significant. For example, the gynecologist's notes indicate I have never been pregnant - though I am pretty sure I spent 27 months of my life in the family way. Also, the PCP's notes say that during my visit two weeks ago we discussed the risk/benefits of cervical cancer screening and taking aspirin as a cardiovascular prophylaxis; neither of these items we mentioned. Since both doctors use EHRs with templates, I am assuming the mistakes were due to the wrong boxes being checked.
  • The records are stored by doctor and arranged in the order submitted by the doctor. The PCP records contain the chart notes in reverse chronological order, followed by the lab results in reverse chronological order. The gynecologist's records, including all the test and lab results, are arranged in reverse chronological order. Based on the way the records are "filed," there's no easy way to create or view a single longitudinal record that reflects all my information. 

I will also mention that both the apps are pretty simplistic, have a few navigation quirks, and could benefit from enhanced user interfaces. I suspect both companies are very much in start-up mode, so perhaps these enhancements will come over time.

Coincidentally I also just discovered that my insurance company (Humana) offers a Blue Button download that is very easy to use and includes a great summary of all my meds, labs, and ER visits. Downloading a concise, detailed summary was very quick and the record is very readable. Unfortunately I am only able to download history from the last 365 days, so again I have no easy way to compare lab results or similar details over time. I am not sure if that is a Blue Button or a Humana issue or both. The other limitation is that the download does not include the actual chart note, since Humana does not have access to those records.

So what have I learned from this experiment?

First, I have tremendous empathy for patients with multiple chronic conditions and multiple providers. Obtaining records is clearly difficult, but even worse would be the task of sifting through hundreds of pages of records to decipher all relevant aspects of a patient's health history. It's a bit like the Big Data dilemma: data-gathering is only part of the challenge; the bigger struggle is finding a way to manage the data and developing a format that lends itself to actionable insights.

Second, some providers apparently do not understand they are required to honor patients' written requests to provide a copy of medical records within 30 days. Or perhaps there is no enforcement of this requirement, so overburdened providers allow these requests to remain buried in overflowing in-boxes.

Third, that Blue Button is good stuff. Why doesn't every provider with a portal offer a Blue Button option?