#myhealthmydata / by David Driscoll

Back in early October, we posted a blog called “Let’s ALL Start Asking For Our Health Data,” encouraging everyone out there—healthy or ill—to request their complete medical records from anywhere they’ve received care as a patient. The goal was to put pressure on hospitals to update their information release processes, many of which are not HIPAA compliant and put an unnecessary burden on patients in need of their health data.

At the end of that blog, we invited anyone who experienced pushback or a lack of compliance as a result of that request to share their story with us, as we wanted to shine a light on some of those encounters here at the Voice of Ciitizens. The responses came in swiftly, many folks obviously eager to get the frustration they experienced off their chests. One woman actually wrote us an email while she was on the phone with her health system! She vented:

“OMG, I am ready to blow a fuse. It has taken me over an hour to source one radiology department at my hospital system. They say they are centralized but have zero clue what that word means! They are under one umbrella (more likely for tax reasons than anything else) but appear to operate as individual groups. I have made over ten calls to ascertain where I can find my radiology imaging and they just can’t answer the question.”

There were many stories like this.

In early November, we followed up with a piece called “Dinosaur Technology,” referencing a series of Tweets we sent to CNBC journalist Chrissy Farr in response to the outdated formats used to share health data. The thread unleashed more responses from frustrated patients, many of whom found it easier to share quick snippets of their experiences on social media than write a personalized email about their story.

That got us thinking: if we came up with a specific hashtag for patients to use when sharing these frustrations online, these stories could be categorized and easily accessible for the public, shining an even greater spotlight on what’s happening around the country.

In the words of the late Justice Louis Brandeis, a champion of individual rights, sunlight is the best disinfectant — and it’s clear from what we’re witnessing that a number of health records departments need to clean up their data release processes. Starting today, we’re encouraging everyone out there to share their stories using the hashtag #myhealthmydata, so that we can continue to put pressure on health systems to improve their HIPAA compliance.

At Ciitizen, our belief is we can do more, together. Let’s start by sharing our health data stories in order to raise greater awareness for a problem that isn’t getting any better.

-David Driscoll