Transparency: To tell or not to tell?

If hospital patients are harmed by their care and no one talks about it, does it mean there’s no medical harm done?

If a tree falls in the forest and no one hears it, does it still make a sound?

Paul Levy, former CEO of Beth Israel Deaconess Medical Center in Boston and a well-known advocate for patient safety and patient-driven care, has been musing lately about transparency in the hospital industry – or, to be more accurate, the lack of transparency.

On his blog, Not Running a Hospital, he points to discussions taking place in Canada and Denmark about whether to publicly disclose information such as medical errors, infection rates and mortality. Then he shares a summary of a book published in the Netherlands about the need for openness. He winds up this triple-header with some criticism of the Joint Commission, the main hospital accrediting body in the U.S., for its fuzziness and lack of leadership in making hospitals safer.

To the average person, these issues might seem rather esoteric. Most people, after all, aren’t in the habit of ardently discussing health care transparency over a cup of coffee or a beer or two. I’d argue, though, that it should matter a great deal to consumers, and here’s why: because you can’t have mutual trust or a level playing field when one of the parties unilaterally decides to hog vital information.

Several statements, both on Levy’s blog and in the comments, leaped out at me. Here’s one from a Danish newspaper account of a recent patient safety conference:

The director of the country’s largest hospital, Odense University Hospital, Jane Kraglund, believes that the hospitals already publish enough data about quality.

“Our quality is transparent, but we do not learn much by putting a malpractice on the website. When we make mistakes, we have a strict system where the error is systematically reviewed, but it will not necessarily come out to the public. Moreover, more information about risk would be more confusing for the patient,” says Jane Kraglund.

Another Danish hospital director worries that “our standing could be damaged if there are too many bad stories about a place where you expect to get the best treatment.”

OK, so this is Denmark. But are attitudes in the U.S. really all that different? A decade ago, when the American patient safety movement began to gather steam, there was considerable debate over whether providers should be required to report errors. Many in the industry were vehemently opposed to the idea. All these years later, there’s still only a handful of states – Minnesota among them – with mandatory reporting of serious events such as wrong-site surgeries.

Although most in the health care industry say reporting errors is the right and ethical thing to do, the available evidence suggests this doesn’t always happen and that errors in fact continue to be underreported.

Meaningful discussion about safety and transparency often is lacking as well at the top level: by hospital boards of directors and trustees.

There are probably many consumers who would rather not know about errors. There seems to be a rising groundswell of sentiment, however, that transparency failures in health care don’t cut it anymore.

Here are some reactions from readers to Levy’s commentary:

– “Have you ever spoken with a mother whose baby was killed by a medical error? Do you think it’s ethical to hide that chance from the next parents? Do you consider a relationship built on false trust to be more important than finding and fixing the reasons those things happen?”

– “It’s not about quality of care for some hospitals, it’s about continuing to attract patients. Just the idea that the administrator would consider revealing information after someone has become a patient in the hospital but not before, so he could choose another hospital, says an awful lot.”

– “Ironically just yesterday I was wondering about how far we can get with transparency in U.S. medicine when the decisionmakers in medicine and safety continue to work more loyally to misguided clinicians than with devoted patient advocates.”

The health care industry’s ambivalence about transparency suggests several things: that the industry a) doesn’t trust the public to understand patient safety data and error rates; b) doesn’t trust what the public might do with this information; c) has difficulty giving up some of its control; d) places too much of a premium on market share and reputation; e) is focused primarily on the down side of transparency rather than on the benefits of being open.

Understandably, this is a difficult conversation to have. Whether you’re in health care or some other industry, it’s invariably painful to have to publicly own up to your shortcomings. The industry isn’t going to get past its ambivalence overnight. But health care has done the let’s-just-sweep-it-under-the-rug-so-no-one-will-notice approach for many years and it hasn’t worked very well, especially for patients. Hard as it may be, the movement needs to continue towards more transparency, rather than less.

Photo: Monkey carving at the Toshogu shrine, Nikko, Japan. Courtesy of Wikimedia Commons

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