How hard is it to 'Get My Health Data'?

A 'tracer' conducts an experiment in patient access
By Michelle Ronan Noteboom
09:11 AM
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"We the people want easy, electronic access to our health information."

That's the seemingly simple objective for supporters of Get My Health Data, a new initiative organized by former National Coordinator for Health IT Farzad Mostashari, MD.

Folks like ePatientDave, Regina Holliday, and other patient advocates have spent years fighting for better patient access to health data, but support for the movement has reached new heights, thanks to recently proposed changes to the meaningful use program.

In April, CMS stirred up the patient data access hornets' nest by proposing a modification to the Stage 2 meaningful use requirement that 5 percent of a provider's patient population views, downloads, or transmits their online health information.

Many providers thought the bar was too high because few patients were interested in accessing their health information online. CMS responded to provider concerns by reducing the threshold from 5 percent to one single patient.

The proposal caused a bit of an uproar as patient advocates decried that one patient was not enough. Mostashari quickly called for a "day of action" to show opposition to the proposed changes.

[See also: Proposed patient access change sparks MU debate.]

Earlier this month Mostashari expanded on the plans for the renamed "Data Independence Day," scheduled for the fourth of July. Organizers are hoping that the one day event will actually spur a larger movement with consumers demanding access to their health data. The intent is to demonstrate to lawmakers, providers, and other decision makers that people do care about electronic access to their health information.

The Get My Health Data movement is asking consumers to sign a petition demanding convenient, secure online access to their health data. In addition, the organization is looking for patients to serve as "tracers" by requesting access to their records and reporting on the response.

I was curious how my family's doctors would comply with such a request, so I reached out to four of them. Here's how it went:

  • Primary care physician. My family practice is part of a large group that utilizes Epic's MyChart patient portal. I accessed the portal and was able to easily view and download my health summary in a format that was very user-friendly. This is how it the process should work.
  • Specialist #1. My gastroenterologist uses gMed EHR and its gPortal. I accessed the portal and easily pulled up my health summary. While it included basic details on my health history, it lacked a few critical elements, such as diagnostic test results. I had the option to email a copy of my medical summary to anyone I chose, as long as they used a secure email with a Direct protocol address. I was also able to download the summary but it came over as a .XML file that was nearly impossible to decipher. I messaged the practice about getting a more user-friendly version of my records and received a quick reply that they could either mail me a hard copy or I could pick up a copy in person. Unfortunately there was no option for a more complete electronic version. All and all this practice came close to delivering what I needed and they get bonus points for being so responsive.
  • Specialist #2. My daughter's endocrinologist uses the Medfusion portal. Actually, it's probably more accurate to say they have the portal installed but it's obviously underutilized. There is no option for accessing medical histories, though you could request lab results or medication refills, as well as pay bills online. You can send a message, so I sent a note asking for an electronic copy of my daughter's records. I wasn't optimistic I would get a response since I have sent them five messages over the last year, none of which appear to have been opened, much less replied to (I ended up calling.) It's been four days since I requested the records and so far no response. I'm calling this a failure.
  • Specialist #3.  Basically ditto to Specialist #2. Nothing is available online and no one responds to my messages.
     

My takeaways:

  • The technology exists to provide patients with easy online access to their medical data.
  • Some providers are a little behind on the technology curve but making good progress.
  • Shame on providers that implement technology to engage patients and then abandon the project. Patients like me use the online messaging option either because the office is not opened at an hour convenient to me, or because I am avoiding a confusing phone system – which never connects me to a live person.

  • Everyone should take 30 seconds and sign the Get My Health Data petition. We all deserve easier and less frustrating access to our health information.