"Unofficial" Patient Records - What Might a Hidden Record Say About You?

A discussion taking place on one of my listserves raises some big questions that have a potential impact on how we empowered patients work with our providers.  While on the face of it, it seems like the solution should be simple, the reality of complex people, personalities, behaviors and circumstances makes solutions a much bigger gray area.

The listserve is comprised of members of the Society for Participatory Medicine.  The focus of the society, of course, is to promote collaboration between providers and patients.

The original question was asked by a doctor.  He stated that he works at a clinic where "flags" are placed in a patient's record - usually about whether the patient is a drug-seeker (addicted to pain drugs). Further, those clinics have policies that do not allow their providers to tell the patient that the notation has been made on their record.  He wanted to know what we thought about those policies.  Should providers hide the notations (flags) they make about patients from those patients?

First, a distinction between health alerts, and what I'm referring to as "flags."  Alerts might be added to our medical records that tell a doctor to remind us to get a flu shot, or remind a doctor of an allergy before she writes a prescription, or anything else that is related to a health issue along those lines.  Within this listserve discussion, there seems to be no question about whether that information should be shared with patients.

The gray areas are about "flags" - those notations that focus on issues such as drug abuse or other addictions, domestic violence, sexual promiscuity, an explosive temper - more like patient behaviors or personal situations that, by their nature, affect their health.

The ensuing discussion has been quite revealing.  It seems that many practices and health systems do have hidden flagging systems, a way to keep "shadow" records;  that is, notations about behaviors and circumstances that are withheld from patients - patients do not know (by policy) that the shadow record exists.  In other words, there are official records - and then there are unofficial records.

As a patient, I am appalled.  As a patient who believes in collaborative and participatory, shared decision-making medical care, I am beyond appalled.  Looking only through my patient lens, I am incensed that such a record could be withheld from me.

Further, I'm not even sure that it's legal.

HIPAA laws are so complex, and almost impossible to wade through, but I can hardly believe that doctors would be legally allowed to keep one set of records for patients to see, and a second set of records that patients are not allowed to see.  That would be a like a corporation keeping two sets of books - one for the IRS and a second, 'real' set.

But as regular readers know, I make every attempt to see the healthcare world through the many points-of-view it requires.  To do that requires some honest questions, like:

If a patient is a pain drug-seeker, and the object is to be sure that patient doesn't become any more addicted than he or she already is, shouldn't there be a notation in the record that alerts doctors to that?

You might say "yes - that's fair - but why does that need to be hidden?"  To which a provider might answer, "But this patient tends to become violent.  We've had to call security the last three times he was here."

Another possibility:

If a patient is being abused by her partner, and the doctor knows the partner always asks for copies of the patient's medical record, and fears the partner will further beat and abuse the patient if he is upset by the notations in the medical record - what would you suggest the doctor do?

Even with scenarios like these, I firmly believe there should be only one record and that patients should have access to everything.  I am never going to buy-in to paternalism or any sort of clandestine approach to keeping notes about patients.

But I do see where there are some gray areas, even if they are only in the "we've always been paternalistic until recently and how we aren't sure what to do" mindsets of providers. My role in the listserve discussion is to continue reminding these bold providers that their role IS shifting and that this mindset must shift along with it.  Wholesale shifts in attitudes will take a long time.  The members of the Society are way out in front of the pack, and I give them a lot of credit for that.

As far as what we patients can do in the meantime....

Take this poll - and tell us what you think about whether shadow records about patient behaviors should be kept.

Continue to request copies of your records after every visit to your doctor.

And be a little bold yourself.  Your doctor doesn't know that you have learned that shadow records are being kept.  So ask about them.  Tell them you want to see all your records, including any hidden side notes that are being kept in your record.

They may deny such a record exists - and that may be true.  Within the practice you go to, there may be no second set of records, or at least not a shadow set being kept about you.  On the other hand, you may shock them just by asking the question - putting them on notice that we patients are becoming savvier than we've been in the past.

It will take both bold providers AND bold patients to shift this system into something that is truly collaborative and participatory.  We empowered patients must be the early adopters of participation and collaboration, and show providers that we can be trusted to share our care decisions with them.

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Agree? Disagree?
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