The missing voice in patient safety

Patients and families are often surprisingly observant of the care they receive. They notice when test results fall through the cracks or something isn’t followed up. They can tell when doctors, nurses and the rest of the team don’t seem to be communicating very well. And they certainly notice when their own input is ignored or dismissed.

A proposal by the Obama administration would harness what patients know by creating a system for them to report errors and close calls in their care. The information would add to what’s already being reported by hospitals and clinicians and broaden the ability to improve the safety of care.

I can think of only one criticism: Why did it take until 2012 for something like this to be proposed?

Although health care has become much more intentional and focused about patient safety, consumers – who bear the brunt of unsafe care – have had few formal mechanisms for identifying potentially unsafe situations or reporting outright mistakes. As a result, an important source of information has remained mostly untapped.

The New York Times explains what patients and families can bring to the table:

Federal officials say that medical mistakes often go unreported, and that patients have potentially useful information that could expose reasons for drug mix-ups, surgery on the wrong body part, radiation overdoses and myriad other problems that cause injuries, infections and tens of thousands of deaths each year.

As you might expect, reaction from health care providers has been mixed. Many are very receptive to the idea and believe it will give them a better perspective on errors and close calls that would otherwise go unreported. Indeed, multiple studies suggest hospital mistakes are significantly underreported; sometimes adverse events are entirely missing from the patient’s medical record. An understanding of the numbers and types of patient safety issues associated with care delivered in the doctor’s office – and how to address them – also is still in its infancy.

Supporters of the proposal believe a reporting system designed for patients will help capture more of this information and fill in some of the gaps.

Others think it’s a bad idea. One of the arguments: Patients won’t be able to discern whether a perceived error is actually standard procedure, hence could flood the system with baseless complaints.

The Association of American Physicians and Surgeons, a group that has gone on record against the Affordable Care Act, issued a statement last week calling the proposal misguided, politically driven and likely to foster an adversarial relationship between doctors and patients.

The whole question of whether to report or not to report medical errors to a national system remains a thorny one. Consumers do in fact have other options if they perceive their care is unsafe or an error occurred. They can complain to the doctor, report it to the hospital, report it to the state or file a formal complaint with a medical practice board or board of nursing.

Talking to the provider may not satisfactorily resolve a complaint, though, especially if there are differing perceptions about what happened, documentation is lacking or the provider simply isn’t very good at dealing with problems related to safety or quality of care. Formal complaints to a licensing authority are a serious step to take and may not always be warranted.

The real issue is that patients much of the time aren’t given a meaningful voice in identifying the safety problems they encounter in their care. Moreover, the system often falls short when it comes to encouraging patients to speak up about their experiences.

In a project launched this past summer, ProPublica began collecting survey information and stories from people who were harmed by their care. Some of the themes that have emerged: Even when they have valid grounds for doing so, most people do not file formal complaints because they’re often traumatized, disabled, don’t understand how the bureaucracy works or don’t even realize an error occurred. Sometimes they feel intimidated by providers; other times they feel social pressure not to complain. Often they find the complaint process unsatisfactory because nothing came of their efforts.

How much information might have been lost because these people didn’t speak up, and how likely is the same harm to occur with other patients because no one knew about it or had an understanding of the total picture?

A national reporting system designed for patients and families won’t cure everything that’s unsafe about American health care, but it seems like a good way to start listening to patients and learning from what they’ve experienced.

2 thoughts on “The missing voice in patient safety

  1. While the position statement from the Association of American Physicians and Surgeons makes some good points, there is great benefit in ANY reporting. Perhaps a deidentified system is better, as they say, but perhaps not. It really all comes down to what is done with the information.

    The important thing is that, in so many ways, our American system is broken. There is another organization that goes by the initialism AAPS, the American Association of Physician Specialists. As a disclaimer, I’m a member of and a leader in that organization. Among many benefits they provide me is my Board Certification in Emergency Medicine. Check us out at http://www.aapsus.org. Our annual meeting next year focuses on Patient Safety, and promises to be a proactive discussion of laws, trends, and best practices.

    There is no doubt that physicians have abdicated leadership in Patient Safety, and that’s a pity. But, with our upcoming conference and the ensuing discussions, we hope to help reverse this.

    • I agree the devil is going to be in the details. It’s one thing to collect the information and quite another to make good use of it. Although I think most hospitals do pay attention to safety, they historically haven’t done it in a way that’s structured or systematic and they often limited it to their own data. You can learn a lot more when you start seeing the big picture, analyzing trends, breaking down factors in common, etc.

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