Is Access to One's Medical Records Really all Good?
The new article in the New York Times describing the benefits of patients having access to their own medical records was very interesting. It got me thinking about all the possible consequences. Don't get me wrong, I think there are real positives, but I had an experience yesterday that got me thinking about how this can go wrong. So here are some thoughts.
I have a very smart and well-informed patient who recently underwent a procedure. She had some clinical heart failure when I saw her in the office last week, so I ordered a BNP. I probably did not need to, but I did it. It came back high. It was not a surprise. In fact, I am not sure what I learned, which means I probably should not have ordered it, but I did. The point is that my patient has access to her lab results, and she noticed the high value. She then went online and found papers describing how high BNP after this procedure confers risk of death. She was very upset and worried about it. I spent an hour on the phone with her yesterday reassuring her. Again, this is just one example, and perhaps I should not have ordered it. But this is a very smart woman and I can make a very good argument that she was worse off knowing about the test than if she had not. This is just an anecdote, but it is a cautionary story of how things are going to change. If the worst that happens is that we spend more time explaining test results to patients, that is terrific. However, I do worry that my story will not be a one-time thing. If so, it could lead to changes in behavior. Some of them will be good. For example, I will think hard about ordering all lab tests. But I also expect that some will be bad. Some doctors (maybe me) will not order tests or say things in the chart simply because they do not want to have to deal with the consequences of an anxious patient. And this could lead to things being missed or not being properly communicated (what a great irony).
In the Spring of 1993, I did my first rotation as a medical student. It was pediatrics. My very first clinical activity on the first day was to round with the inpatient team. I will never forget how it felt. I understood about 30% of what they were saying. It was scary and frustrating. And I had just completed 2 years of medical school and I had also grown up around doctors and doctor language. The point is that clinical language is full of complex jargon. Some of it is unnecessary, but medicine is also very complex. While the internet has made it less of a big deal to figure out what the jargon means, the internet has not solved the problem of putting information into context and interpreting what it means. That takes knowledge, experience, and judgment. Most people reading medical records have honed those skills over decades. It is the reason lawyers hire experts to help them interpret patient charts. So does that mean we should hide the medical record from patients. Absolutely not. But simply granting access does not mean the results will be all good. In fact, we have much to learn and there will be many mis-steps along the way.
Finally, one last thought. I work at a big academic medical center that has an electronic medical record. As such, I have access to the medical records of me and my family members. With rare exceptions, I have not looked at them, even mine Why? I am not sure. Maybe it feels a little like reading someone else's diary. Maybe I am a fool. Maybe I would have caught something horrible and saved one of us. Probably not. I probably would just have gotten anxious and my judgment would have been clouded. I guess there was a reason they advised us never to treat our own family members. Objectivity does have value. I offer this as yet another caution. It is hard enough for an objective and well-trained person to comprehend the complexities of a medical record and to place them in the proper context. Are we to believe that untrained and non-objective people will be able to do this and without causing great fear/anxiety or altering the way medicine is practiced in a very bad way? I do not know...
I have a very smart and well-informed patient who recently underwent a procedure. She had some clinical heart failure when I saw her in the office last week, so I ordered a BNP. I probably did not need to, but I did it. It came back high. It was not a surprise. In fact, I am not sure what I learned, which means I probably should not have ordered it, but I did. The point is that my patient has access to her lab results, and she noticed the high value. She then went online and found papers describing how high BNP after this procedure confers risk of death. She was very upset and worried about it. I spent an hour on the phone with her yesterday reassuring her. Again, this is just one example, and perhaps I should not have ordered it. But this is a very smart woman and I can make a very good argument that she was worse off knowing about the test than if she had not. This is just an anecdote, but it is a cautionary story of how things are going to change. If the worst that happens is that we spend more time explaining test results to patients, that is terrific. However, I do worry that my story will not be a one-time thing. If so, it could lead to changes in behavior. Some of them will be good. For example, I will think hard about ordering all lab tests. But I also expect that some will be bad. Some doctors (maybe me) will not order tests or say things in the chart simply because they do not want to have to deal with the consequences of an anxious patient. And this could lead to things being missed or not being properly communicated (what a great irony).
In the Spring of 1993, I did my first rotation as a medical student. It was pediatrics. My very first clinical activity on the first day was to round with the inpatient team. I will never forget how it felt. I understood about 30% of what they were saying. It was scary and frustrating. And I had just completed 2 years of medical school and I had also grown up around doctors and doctor language. The point is that clinical language is full of complex jargon. Some of it is unnecessary, but medicine is also very complex. While the internet has made it less of a big deal to figure out what the jargon means, the internet has not solved the problem of putting information into context and interpreting what it means. That takes knowledge, experience, and judgment. Most people reading medical records have honed those skills over decades. It is the reason lawyers hire experts to help them interpret patient charts. So does that mean we should hide the medical record from patients. Absolutely not. But simply granting access does not mean the results will be all good. In fact, we have much to learn and there will be many mis-steps along the way.
Finally, one last thought. I work at a big academic medical center that has an electronic medical record. As such, I have access to the medical records of me and my family members. With rare exceptions, I have not looked at them, even mine Why? I am not sure. Maybe it feels a little like reading someone else's diary. Maybe I am a fool. Maybe I would have caught something horrible and saved one of us. Probably not. I probably would just have gotten anxious and my judgment would have been clouded. I guess there was a reason they advised us never to treat our own family members. Objectivity does have value. I offer this as yet another caution. It is hard enough for an objective and well-trained person to comprehend the complexities of a medical record and to place them in the proper context. Are we to believe that untrained and non-objective people will be able to do this and without causing great fear/anxiety or altering the way medicine is practiced in a very bad way? I do not know...
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