DC Medical Malpractice & Patient Safety Blog

Many patients (and a few doctors) continue to be amazed that the law requires that patients be able to obtain a copy of their own medical records. And reading them is good for your health, I and other patient safety advocates maintain.

Here's what I wrote on a New York Times blog about this:

Getting and reading your own medical records is Step One of the advice I give patients to become involved, intelligent, and actrive in their own care. There are at least three things the patient learns:

1. Am I communicating well with this doctor? Is the history of my problems recorded in the records recognizable to me and reasonably complete?

2. Is there some lab test result that I need to know about where the communications has fallen through the cracks somehow?

3. Are there any errors that need correcting?

These are vital questions that help patients get to the right doctor and make sure tragedies don’t occur. Top providers like Brigham & Women’s Hospital, the Cleveland Clinic and the Veterans system make it easy for patients to read their own records online. Eventually, we will all read our records routinely, and we’ll be healthier for it.

Read comments from other Times' readers here.

A lot of doctors fret about patients reading over their shoulders, but as a non-physician who reads medical records every day, I can say without doubt: It's a good thing.

One hundred thousand preventable deaths from medical errors in hospitals each year: That is the usual statistic cited by patient safety advocates. It comes from a 10-year-old report issued by the Institute of Medicine of the National Academy of Sciences. The fact is, though, that the death and injury rate could be substantially higher. No one is sure, because no one is counting "adverse events" in a rigorous, systematic way, and evidence keeps piling up that hospitals under-report these events to health authorities and worse, cover them up.

An investigation by the New York Daily News of the city's municipal hospital system -- with eleven hospitals and 1.1 million patients treated last year, the nation's busiest city-run system -- found dozens of examples of failures to report egregious errors, and subsequent cover-ups including alteration of medical records to make it look like nothing had gone wrong.

The Daily News reported:

The coverups hid a trail of human suffering among patients who were maimed and relatives who were never told the truth about how their loved ones died or were injured unnecessarily.

The newspaper found a pattern of failures by state health authorities to act on evidence of fraudulent behavior in covering up the injuries. Moreover, it found that the state reporting agency itself was dysfuctional. According to the article:

The state is supposed to track and analyze all medical incidents and implement improvements. The problem is this oversight system — the New York Patient Occurrence Reporting and Tracking System (NYPORTS) — is a disaster.

Since 1999, all New York hospitals have been required to self-report a long list of medical incidents to NYPORTS, which in turn analyzes the incidents and implements patient safety reform.

Sunday NYPORTS barely functions. The Statewide Council that oversees it hasn't met in more than two years. Though NYPORTS is supposed to release "annual" reports, the last one filed is dated 2004.

To avoid needless injury, patients have to be vigilant about their own health care. That is why I wrote my book, "The Life You Save," which lays out a system of nine simple steps for patients to follow to get the best medical care and avoid the too-frequent disasters that happen in our fragmented care system.

A column in the New York Times by Pauline Chen, M.D., relates how a colleague of hers named "Ed" crashed and burned on his way to becoming a general surgeon, seemingly because of his difficulty in learning from his own mistakes.

The blog comments by both doctors and patients are revealing. Many make the point that physicians can deal with the stresses of medical practice, and become better at their craft, by being less obsessed with perfection and more open to working with others in a supportive, teamwork environment. I particularly enjoyed a comment (No. 121) from "Susan," that linked the issue to the recent story by Jane Gross in the Times about the Sisters of St. Joseph near Rochester, New York, who have figured out that putting the patient's wishes at the heart of the enterprise makes for more humane and better health care.

Here is the comment I posted on the Times' site:

Susan’s comment is right on target. A team ethic, and the recognition that “we’re all in this together” — patients included, goes a long way toward making the inevitable small mistakes a teaching moment rather than one step toward a disaster for the patient. And when disaster does happen, honesty is always the best policy. I represent patients in lawsuits against hospitals and doctors, and can say emphatically that the medical industry could greatly reduce its exposure to legal actions if hospitals and doctors would just respond with maturity and complete candor when mistakes happen.

One more change in philosophy could help reduce the toll of medical error. If patients were more involved at every step of the process, we could help nip a lot of disasters in the bud and get better care for ourselves and loved ones. There is much that we can do, starting with reading our own medical records. I just wrote a book about this called “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.” Chapter One can be read at http://www.lifeyousave.com.

Evidence continues to pile up for why patients need to read their own medical records. A new study finds it is distressingly common for primary care practices, especially big ones, to fail to inform patients about abnormal test results.

The study was published in the Archives of Internal Medicine and was reported by Nicholas Bakalar in the New York Times. The study was also featured in Tara Parker-Pope's "Well" blog at the Times, which features a number of horror story comments by readers.

Overall, the study found seven times out of 100, abnormal test results were not conveyed to patients. In two large primary care practices, one in four abnormal test results were never mentioned to the patient.

Bottom line: Patients who don't hear back the results of their testing can never assume that no news is good news. People need to ask for a copy of their test results from either the doctor's office or the lab where the test was done.

Getting and reading your own medical records is Step One in the nine-step system I recommend for getting the best medical care, in my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

The NY Times Well blog has a podcast of Dr. John Hickner, professor of family medicine at the University of Chicago, discussing why patients should always call their doctors to follow up after having a medical test done.

We have previously discussed the issue of medical test results getting lost in transmission: the patient will expect the doctor to call if there is bad news, and will feel reassured if he or she hears nothing, while the doctor's office will wait for the curious patient to contact them, or will simply forget, and the patient "falls through the cracks." As a result, the patient may not hear about important test results.

The best way for patients to deal with this is to remember to call their doctors after testing and keep in mind that no news is not necessarily good news.

Another thing that patients can do is always ask the testing facility for a copy of the test results. Some laboratories and radiology offices resist this, but every patient has a right to their own records.

Serious injuries can happen to patients from delayed treatment due to these failures of communication, so it's important for patients to be pro-active about their test results.

A new study from the journal Quality and Safety in Health Care, and discussed in the NY Times Well blog, reveals common testing mistakes by primary-care doctors. Of course, the same kinds of errors can happen in hospitals and other health care settings.

Out of close to the 1,000 mistakes experienced by 590 patients, the following testing mistakes were the most common:

-13% involved ordering the wrong test or failing to order a test

-18% involved performing the right test, but doing it improperly

-25% involved delays in getting tests back from the laboratory, failure to get the tests back at all, or errors on the results report

-7% involved failing to follow up with patients after receiving results from the laboratory

-75% of the mistakes caused the patient to suffer (through delays in proper treatment, greater expense, physical pain or worsened overall health).

What can a patient do about this? A possible solution would be to carefully ask and write down what specific test your doctor has ordered for you. Ask when the results of the test are expected from the lab. Then make sure you call to follow up after the doctor's office should have received the results. Read the results report, if you can get hold of it, to see the name of the test and make sure that the results are for the same test that was ordered and performed. All of these things might help reduce your risk. Calling the doctor to follow up is probably the most important item on the list, as Dr. Lamberts says in his quotation in the linked NY Times blog post.

Alisa Miller at Nursing Online Education Database has an article on how to start taking control of your health records. "Taking control" in this case means storing, updating and sharing them in a way that is convenient for you.

The article is chock-full of useful links on the following subjects:

-what are the options for electronic health records, how they work and how you can use them

-which resources for medical record storage are available for free

-which resources for medical record storage are available, but charge money

-which services are available for people with specialized illnesses or needs

-which services are available for health care professionals

Checking the article out and browsing the links would be very helpful for anyone interested in learning more about these topics. Getting and reading your own medical records is a key step in making sure you receive high quality medical care.

Tara Parker-Pope has an article on the privacy implications of big companies like Microsoft and Google entering the medical records storage business. We have discussed this issue before, stressing the importance of patients needing convenient access to all of their medical records.

Parker-Pope, however, discusses a potential downside to this development: a loss of privacy for patients. Violations of medical privacy have been in the news lately. See, for instance, UCLA Medical Centers' employees' violations of the privacy of several well-known patients. If data is stored in Web-based systems by the same companies that track users' online activities, what kind of privacy can patients expect? These concerns become even more pressing when you consider that HIPAA--the law that guards patient privacy--did not anticipate and most likely will not apply to these proposed personalized Web-based systems. As Parker-Pope comments:

Even more surprising is the response of Peter Neupert, the vice president in charge of Microsoft’s health group, who resisted the suggestion of extending Hipaa to newcomers like Microsoft and Google.

This resistance is predictable but disturbing, to say the least. Privacy should be a huge concern for both creators and users of these systems, and customers should insist on Google and Microsoft addressing these issues.