Opening up the doctor’s notebook

If you could see what your doctor is writing about you in your medical record, would this hurt or enhance the doctor-patient relationship?

A new survey on the progress of the OpenNotes project found that the majority of patients – more than 90 percent – are supportive and even enthusiastic about being able to read the doctor’s notes. But among physicians, the reaction was more mixed. Although many believe that sharing their notes can be beneficial, doctors in general have far more reservations about it than patients do.

The findings of the web-based survey appeared a couple of weeks ago in the Annals of Internal Medicine.

I’ve been following the OpenNotes project since it was launched some 18 months ago (I’ve blogged about it here and here). A quick summary: Lab reports, test results and other portions of the medical record increasingly are being shared with patients in the name of helping them become more informed and engaged in their care, not to mention that it’s the patient’s legal right to see their chart. But patients historically have had more difficult access to the doctor’s notes, which typically consist of subjective observations about the encounter – what the patient said, how he or she behaved, the doctor’s thoughts about a potential diagnosis and so on.

Depending on your point of view, sharing the doctor’s notes could enhance patient care or could be downright harmful. So far, however, there’s little actual evidence to support either of these positions. The OpenNotes project, which involves 100 doctors and 21,000 patients in three states, aims to test what happens when patients have increased access to the doctor’s notes.

That there would be mixed feelings about this is no surprise. There’s in fact a rather significant gap in how patients and clinicians perceive the need for information. Patients increasingly want more information but many clinicians question how much should be shared and how well patients will be able to understand it.

Recent debate at the Bioethics Discussion Blog shows just how wide this gap can be. Allowing patients unrestricted access to their full medical record is “a bad idea,” one person wrote. “There’s no reason for most people to have complete, unfettered access to their medical records, whether guaranteed by law or not.”

Others vehemently disagreed. Wrote one commenter:

I believe that providers who don’t think patients should have complete access to their own medical records do so for one of two reasons:

1. They have an irrational fear of “losing control” of the provider/patient relationship by not being able to be the gatekeeper to what the patient sees.

2. They have something to hide.

Worries about sharing the medical record aren’t exclusive to doctors. I once picked up my medical chart only to have a nurse literally grab it out of my hands and tell me I wasn’t supposed to read it. If she thought she was somehow protecting me, she was wrong; it left me wondering what exactly was in my medical record, and it made me trust this particular hospital a whole lot less.

Although the OpenNotes project is, on its surface, about giving patients more access to their medical information, in a deeper sense it’s about something else: the cultural differences that tend to persist between the world of health care and the world of being a patient, between the doctor’s role as keeper of the information and the patient’s growing expectation of being more participatory.

Do providers really need to worry so much about what patients are (and aren’t) allowed to see?

“These fears are overreactions,” writes Dr. Thomas Feeley of the renowned M.D. Anderson Cancer Center in Houston.

M.D. Anderson has been giving patients access to their electronic medical record since 2009, he writes. “While initially doctors complained that they had to explain more to patients about what was written in their records, the doctors soon came to realize the benefit of having patients who are more informed about their care plan and lab results.”

If the topic is volatile, maybe it’s because of the tensions it reveals between providers and patients, writes Stephen Downs at The Health Care Blog. “From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care.”

Many clinicians seem to believe their patients can’t handle the truth, while patients overwhelmingly say otherwise, he wrote. “What do you all make of that gap? How serious an issue is it?”

The OpenNotes project undoubtedly will tell us more when the final results are published. In the meantime, this will continue to be an interesting debate.

Who are you? Misadventures in misidentification

Being misidentified – or having your identity stolen – can bite hard. But when it comes to your medical ID, the consequences might be especially serious. Not only can it create havoc with figuring out who’s supposed to pay the bill, but it also could lead to unintentional errors in the patient’s care.

I learned this the hard way several years ago when I was hospitalized in the Twin Cities. It happened to be the same hospital where my sister-in-law gave birth to her two children. She and I have the same first name and same last name, with different middle initials. Our dates of birth are the same month and same year, just four days apart.

You guessed it – I was mistaken for her. By sheer chance, the person at the admitting desk mentioned casually, “Oh, I see you’ve been a patient here before.” I had not, and I quickly realized she was talking about my sister-in-law. We managed to straighten it out, but not before the wrong medical chart was sent up to the patient floor.

I thought that would be the end of it. I was wrong. Not long after the bills went out, my sister-in-law called me. The information that we were two separate persons apparently never reached the physician clinic, and as a result they billed her instead of me for the doctor’s services. Meanwhile the hospital bill was languishing in some kind of limbo. I waited for the insurance statement… and waited… and waited. After two months went by, I called my insurer to ask what was taking so long. The reply: They couldn’t process the bill because they didn’t have the medical record. I called the hospital and was told they couldn’t send the medical record to my insurer because I hadn’t signed the release form. It was news to me; I clearly remembered signing a whole stack of forms. Somehow, in the scramble after the identity mix-up, they must have been misfiled or disappeared.

All told, it took several long-distance phone calls and a letter to get this relatively minor confusion straightened out. The admissions paperwork I’d signed never resurfaced. And to this day, I can’t be totally sure that my medical record and that of my sister-in-law haven’t been at least partially co-mingled.

That’s why I sat up and took notice when Rice Memorial Hospital adopted a policy earlier this month on addressing and preventing patient misidentification. Other hospitals are taking similar action; in fact, new rules by the Federal Trade Commission require them to do so. They have until Aug. 1 to comply.

Patient misidentification tends to fall into three broad categories: inadvertently confusing one patient for another; using a false ID; and outright medical identity theft.

Of the three, medical identity theft is, hands down, the most challenging to address. Here’s what the World Privacy Forum has to say:

Medical identity theft occurs when someone uses a person’s name and sometimes other parts of their identity – such as insurance information – without the person’s knowledge or consent to obtain medical services or goods, or uses the person’s identity information to make false claims for medical services or goods. Medical identity theft frequently results in erroneous entries being put into existing medical records, and can involve the creation of fictitious medical records in the victim’s name.

Medical identity theft is a crime that can cause great harm to its victims. Yet despite the profound risk it carries, it is the least studied and most poorly documented of the cluster of identity theft crimes. It is also the most difficult to fix after the fact, because victims have limited rights and recourses. Medical identity theft typically leaves a trail of falsified information in medical records that can plague victims’ medical and financial lives for years.

How common is medical identity theft? One estimate puts it at about 3 percent of the 8 million or so cases of identity theft that occur in the United States each year. Many experts worry that with the increasing use of online medical records, the incidence of medical identity theft will rise.

Many victims might not even know their medical identity has been stolen until they receive an unexpected bill or discover it on their credit report, as this recent New York Times article recounts.

Locally, these situations don’t appear to be too common – at least yet. More often, what local providers encounter is someone using a false ID that has been obtained for employment. It can sow doubt and confusion over the patient’s real identity and increase the risk of an inaccurate or incomplete medical record. It also makes it harder to determine whom to bill.

And any patient, of course, can fall victim to simple error. It may be tiresome for patients to have to repeat their name over and over during a hospital stay, but it helps ensure the wrong procedure or the wrong medication doesn’t accidentally reach the patient. Most hospitals now use at least two identifiers – name and date of birth – to make sure the patient is correctly identified. They also typically have procedures they follow when two patients with the same name happen to be hospitalized at the same time. Some hospitals also have adopted bar coding to further reduce the risk of patient misidentification.

As this case study from the Agency for Healthcare Research and Quality shows, however, mistakes can still happen. In the worst-case scenario, someone might undergo surgery intended for someone else, or parents might unwittingly take home the wrong infant.

The best defense, say experts, is to be vigilant. Get copies of your medical records, scrutinize the bill, and speak up if something doesn’t seem right. The fact is, if it hadn’t been for an off-the-cuff remark by a hospital admissions clerk, I would never have known about my medical identity mix-up until much later. And the longer you wait, the harder it can be to correct the problem.

HealthBeat photo by Anne Polta