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: [email protected].

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?