A recent article in USA Today talked about Regina Holliday’s efforts to make the medical record more easily and promptly available to patients so it becomes as a tool patients use as they engage in co-managing their own care. Her cause is just and her story is compelling, so I was dismayed at the pushback saying: Not so fast. There are lots of errors and ambiguities in the record, so it is in everyone’s best interest to make the record hard for patients to obtain.
What a concept.
The commonest examples listed by opponents of patient access to patient information reflected a combination of poor communication with patients and concern about the extra work that transparency might require for institutions and clinicians. For example:
“…the majority of patients don't under differential or provisional diagnoses and want those removed, because they say they are an error. The majority of patients don't understand trade versus generic drug names, and want those removed because they are an error. The majority of patient's don't understand autopopulation of fields (when you click normal) and say the doctor didn't ask me those things, and want them removed because they are an error; the majority of patients don't understand spontaneous abortion, and definitely want that removed it, because they never had an abortion; the majority of patients don't want "dependence on" anything included in their records, and want it removed because it's an error…. they are very unhappy with all the errors in their medical record. And then, there are the legitimate errors due to poor documentation on admission, hospitalists who see the patient once and don't review the record adequately, and nursing staff who just want to get their charting done and go home.”
Everyone who works with medical records knows that the record is full of both errors and ambiguity. The question is what to do about it. There are two general categories of response.
(1) Make it hard for the person with the most to gain or lose (that would be the patient) to see the record, because that reduces the awareness of the problem and the pressure to fix it.
(2) Make it easy for the person with the most to gain or lose (that would be the patient) to see the record, because that increases awareness of the problem and creates both incentive and opportunity to fix it.
I understand the implications of cumbersome, user-hostile, and error prone documentation. Like all clinicians, I get 100+ page documents after my patient's 5 day stay in the tertiary care center, where key data is intermixed in (obscured by) a flood of trivia, and which no one has gone through or vetted. Like all clinicians, I have to deal with the letter from the orthopedist about my patient’s which incorrectly states she is HIV positive.
I spend all day with patients, trying to help them understand their health (or illness) and use the health care system. I am painfully and exhaustingly aware of how complex medicine is, and how imperfect our information and documentation systems are. I just don't think that hiding the flaws from the patient makes any sense.
Look at it this way. What if my bank said they didn't want to give me an itemized statement of my transactions, explaining that it includes technical financial terms, is hard to understand, and is likely to have errors? They don’t want me to be confused, upset, or angry, so if I submit a written request and pay a reasonable copying charge, they will send me my balance and a summary limited to total deposits, withdrawals and interest within 30 days? I'd lose confidence in my bank and find another. And I would tell all my friends to do business elsewhere.
When an institutions or a clinician tells a patient that the record cannot be made promptly available because it is too ambiguous, has errors, and might be upsetting, that is a terrible and frightening message. It undermines trust. A reasonable patient will ask, if I can't trust the institution to share with me in real time an accurate accounting of what they do and why, is there any reason I should trust them to put me to sleep, cut me open, and take out parts? Or irradiate me? Or infuse toxic chemicals?
If I were a malpractice attorney, I think I would want a drawer full of letters from hospitals explaining that they are not making the record transparent to the patient because of ambiguity and errors. I can hear it now: “Ladies and gentlemen of the jury. The hospital has admitted in writing that their documentation is ambiguous and often incorrect. Why should we believe their claim that the information in the record supports their statements that….?”
The excuse “we need to make it hard to access the record because it is poor quality” just doesn't work for me. The reverse is true. We need to make it easy for the patient to access the record so we can do a better job of making it accurate and usable. The best way to make the record accurate and understandable is to make the default be that the patient knows what is going into the record when it is going into the record and while it is being used, not days, weeks, or months later when it has been retroactively revised or redacted in the interest of the institution or clinician.
We should all document care with the assumption that we are recording what we are thinking, and why we are doing what we are doing, with the information we have at hand. That is, we are telling the truth. This way, we and the patient are on the same page, both literally and figuratively. If the record accurately reflects what we are doing and the information we are using, even though it may at times be confusing, ambiguous or contain errors, we have nothing to hide.
Yes, it may require more time and effort on the part of the clinician and the system. So be it. Inconvenience for the clinician, the institution, or the clinical and support staff, pales beside the imperative of putting the best interest of the patient as the first priority that trumps all others.