Know thy health record

By Erin McCann
09:27 AM

ONC launches the ‘What’s in Your Health Record??’ video contest, aimed at improving patient outcomes

WASHINGTON — “Know thy health record” may seem a far cry from Socrates’ ancient Greek aphorism, “Know thyself,” but the Office of the National Coordinator for Health Information Technology (ONC) hopes its new “What’s in Your Health Record??” video contest will bring patients some of the same good old-fashioned enlightenment.

Launched in July, the challenge aims at spurring patients’ engagement with their own personal health information. Officials hope to emphasize a patient’s legal right to access these health records – a right afforded by the HIPAA Privacy Rule – while also showing what being informed and involved with one’s health record can do to improve clinical care.

Both teams and individuals are encouraged to submit short videos sharing their anecdotes on how requesting a copy of their health record and actively examining the information improved the overall quality of their care and helped the patient better understand their own health. Six awards, totaling to $7,200, will be presented to the winners in September.

“Health information is critical to all patients so that they can track their progress through wellness programs, monitor chronic conditions, communicate with their treatment teams and adhere to their important treatment plans,” wrote Leon Rodriguez, director for the HHS’ Office for Civil Rights (OCR), in a statement.

Proponents of the ONC initiative are lauding the contest as an imperative step towards improving patient care outcomes.

Dave deBronkart, also known as “e-Patient Dave” is an advisory board member for the video challenge and a vehement supporter of its mission, since he’s experienced first-hand, the imperfect reality of patient health records.

If the patient were to simply take the time to request a copy of their health record and actually examine it, numerous patient record errors he has observed in his career could easily be remedied, he says.

For deBronkart, knowledge is indeed a virtue. He mentioned one personal anecdote that showed this in no uncertain terms: A while back, when he started being more curious about his own health record, he remembered asking to review one of his X-ray reports. It turned out to be a worthwhile request – as he noticed it listed him as a 53-year-old female, despite his legal name being listed on the record.

In addition to inaccurate information, data omissions are also potentially consequential. Years ago, deBronkart recounted that his wife’s health record did not list her penicillin allergy, an omission that could have caused severe health consequences.

“If the patient and family just take a look, they can quickly upgrade the information. Nobody is in a better position and nobody has more at stake,” he said.

Having previously worked in the journalism industry, deBronkart explained that if you write a story for a newspaper, there are copyeditors who have the specific task of meticulously reading through the story and correcting any mistake or misstep.
“Well there aren’t any proof readers on your medical records,” he said, “And that’s what you can do so that some late in a hospital room, the nurse or doctor who is working too long a shift, when they go look at the computer screen what they see is correct.”

Healthcare is an entirely different beast when compared with other industries, and often times that contrast manifests as lagging behind when it comes to information technology.

DeBronkart pointed out that when making an online purchase, if instead of entering your ZIP code, you enter the Declaration of Independence, the software will catch the mistake and register, “Wait a minute, that’s not a ZIP code.”

But currently, for a patient’s health record, “that software doesn’t exist yet,” deBronkart said, “So it doesn’t do any good to blame the people who were working with these systems. What’s useful is for us all to get together and clean [the data] up while we’re automating.”

ONC officials hope a patient’s personal anecdote will be more apt to inspire and encourage other individuals to be engaged with their health records.

Erin Poetter, policy analyst at the newly-created Office of Consumer eHealth, said the agency expects that more people are “interested in hearing from others like them about why they’ve gotten access or why they’ve requested their information and what they’ve found once they looked inside” – as opposed to the government saying, “‘We think you should do this.’”

She added that ONC is “hoping to crowd-source ideas from real people to motivate others because we think that having access to your information and then using that information is a critical first step to being a more engaged patient and partner.”

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