Sharing
information has to start with this – know to whom the information belongs. Hint:
it’s not you, Doc, even if you’re the one holding it.
It’s
like it was yesterday. It was the first day of school in the second grade. I’d carried
my baseball glove and ball for a game of catch during recess. Ricky had done
the same. We chose to use his ball. He’d painted it green and yellow to honor
his beloved Oakland Athletics. Mine just had a big “T” on it. I left it on my
desk.
On
the way to recess the new kid asked if he could use my ball. He didn’t have one
but he looked like he knew how to play. And since Mom had taught me to share, using
mine was fine.
When
recess ended I went to retrieve my ball. The new kid threw the ball back to me.
But it got by me and the teacher politely picked it up. She and I talked
baseball on the way back to class. We were settling back in our seats before I realized
that she still had the ball. I watched her put it in her desk drawer. Cool. It
would be safe there until I needed it.
After
class I went to her desk to ask for the ball. I waited as she talked to another
kid. Meanwhile, Mom was waiting in the carpool line. Knowing that, I reached
for the handle on her desk drawer to retrieve my ball.
The
teacher slapped my hand with a ruler and said, “You can’t look in there.” “Yes,
ma’am. But I’m just getting my ball while you’re busy with another patient
(oops, I mean student).”
My
ball. Someone else used it with my permission. She now stored it. I wanted to
use it. She suddenly acted like it was her ball. Okay, maybe I needed some sort
of permission to access it. Maybe she had stuff in there from other kids. But
at some level it should have been reasonable to let me get my ball – even a
second grader knew that.
So
is the way it goes with patient data. The ball Ricky and I used was green and
yellow. Maybe you’ve heard of the “blue button”. The Department of Veteran Affairs initially
implemented it. Other public and commercial health plans have since adopted it.
More than a million patients currently have access to their health data with
the tool as found on health plan websites.
And here’s what we learned about its use and patient views on personal
health information at last summer’s Consumer Health IT Summit:
Who owns it – “It’s my right to have it,” said one veteran who suffers from a heart condition and Type 2 diabetes. “They’re my medical records and, with the Blue Button, I’ve got control of them.” Not only does he own it, he knows that it can be easy to access.
Who stores it – “There’s a wide perception
out there that HIPAA is a barrier,” said Department of Health and Human
Services Director of the Office for Civil Rights Leon Rodriguez, JD. “HIPAA is
a valve, not a blockage. HIPAA is meant to regulate health information so that
it is used to benefit the patient and for no other purpose.” So maybe the IT guy should stop offering, “We
can’t do that. It’s a security issue,” in response to how it’s stored and
accessed and admit that it’s really just an attitude issue. Most of your
patients are accessing confidential information from other sources (i.e. the
bank). They don’t see their health record as any more valuable than their
banking information or any more difficult to access or secure.
Who uses it – allowing access “moves us from personal health records tethered to
particular providers to the concept of a personally controlled health record,”
National Coordinator for Health IT Farzad Mostashari, MD, ScM, said. Rather
than just viewing the record, users are encouraged to take ownership of their
data. Patients can add information, point out errors in their records and share
their health information with whomever they like. Heck, they could even put a big “T” on it if
it’s theirs.
Individually
owned health information is expected to produce better health outcomes in the
patient-centered future of healthcare. So let’s agree that the patient owns the data. Let’s
let them share it as they like. And let’s accept the notion that whether on the
clinic’s system or in the teacher’s desk drawer – we’re going to have to allow
the owner to access it when they like even if it’s just for another game of
catch.
