I was recently browsing through the nearly 200 stories we’ve compiled with our
Patient Harm Questionnaire,
when I was reminded again of a troubling truth. Many of the people who
suffer harm while undergoing medical care do not file formal complaints
with regulators. The reasons are numerous: They’re often traumatized,
disabled, unaware they’ve been a victim of a medical error or don’t
understand the bureaucracy.
That’s a problem for those individual patients and for the rest of us. There are many places to complain: a
state licensing agency; a professional licensing board that monitors
doctors or
nurses; the
Joint Commission, which accredits hospitals or a Medicare
Quality Improvement Organization.
But if there are no complaints, there are no independent
investigations, and that means no outside accountability for providers
who may have made mistakes, and no public inspection reports that
documents the case -- assuming an agency makes reports public, which is
not always the case. It’s a collective problem because patient safety
flaws that remain hidden, if they are not corrected, may be repeated.
We have staggering estimates of the number of people harmed while
undergoing medical treatment. A review of medical records by the U.S.
Health and Human Services Department’s inspector general found that in a
single month
one in seven Medicare patients was harmed in the hospital, or roughly
134,000 people. “An
estimated 1.5 percent of Medicare beneficiaries experienced an event
that contributed to their deaths,” the
IG found, “which projects to
15,000 patients in a single month.”
But there’s no central system in place to tally and track these events.
There’s no way to know when and where patients are being harmed or to
tell if the problem is worse in one place than another.
It’s not like keeping track of patient harm is a new idea. More than a
decade ago the Institute of Medicine’s landmark “To Err Is Human” report
called for a national system to capture cases of serious harm to patients or death. The report said accurate reporting
provides accountability and knowledge that leads to learning. That’s information that could save lives.
“You really can’t improve what you don’t measure,” said Dr. Julia
Hallisy, president of the Empowered Patient Coalition. “How do you know
where to focus your improvement efforts if you haven’t measured what’s
happening in the first place?”
Efforts at the state level appear to be falling short, according to
federal inspectors. In many states, hospital are required by law to file
a report every time a patient suffers unexpected harm -- often called
“sentinel” or “adverse” events. But a July report by the HHS inspector
general’s office found that
only 12 percent of
harmful events identified by the office even met state requirements for
reporting them. Compounding the problem: Hospitals themselves only
reported 1 percent of the harmful events.
We found something similar when I was a reporter in Las Vegas. We used hospital billing records to identify
3,689 cases of patient harm at
the city’s hospitals in a two-year period. Each of those cases would
fit the state’s definition of a “sentinel event,” meaning the hospitals
were required by law to report them. Yet in the same time period they
reported to the state only 402 sentinel events.
The federal
Agency for Healthcare Research and Quality is now accepting public comment about a proposed program to encourage consumers to complain about harm suffered while undergoing medical care.
The goals include collecting information in a common format, developing prototype methods for gathering information on
the phone
and Internet and creating a follow-up questionnaire for medical
providers.
Patients will be asked what happened, who was involved and
for permission to follow up with the providers involved in the event.
I recently referred the 1,000 members of the
ProPublica Patient Harm Facebook Group to a story about the proposal in
The New York Times. Many members of the group have suffered harm firsthand and filed complaints, so the article created
lively discussion:
-
Robin Karr said
that based on her experience, she’s skeptical about reporting harm
directly to the government “but not without hope” about the proposed
program.
-
Debra Van Putten said
she knows many people who have filed complaints about harm they
suffered, but little came of their efforts. Patients want more than mere
acknowledgement, she said. They want accountability for whoever is
responsible.
-
Martha Deed said
there are so many barriers to a patient reporting harm -- emotional
trauma and physical disabilities, feeling intimidated by providers,
social pressure not to complain -- that a passive questionnaire is
unlikely to elicit responses. Instead, the patient harm information
should be gathered in a way that’s standardized, she said, like the national survey that’s administered to recently discharged hospital patients that has results publicly reported on Hospital Compare.
That’s food for thought for those developing the program. Official
public comment is due Nov. 9 and can be sent to Doris Lefkowitz, the
AHRQ reports clearance officer:
We’d also love to hear your comments. How do those of you who work in
the medical field feel about this type of reporting system? Patients,
what do you think about it? And what would you recommend as
characteristics that would be essential to such a program?
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