Is there a skill more basic to medicine than getting the patient's history?
In medicine a great deal of attention is paid to the chart - from medical school onward. The clipboard containing the chart is one of the iconographic images of medicine. When a doctor comes in to see the patient he wears a stethoscope and carries a clipboard containing the patient's history on a chart. This is medicine at its most basic. This is where it all starts, or in some cases, ends.
Routine practice with regard to charts is defensive documentation and risk-reduction techniques. It is tailored to make medicine safe for healthcare providers. Defensive documentation is taught in medical schools. It is required by insurance companies and government agencies. Medical associations publish primers and refreshers to keep their members well schooled and up to date.
The core of this documentation, the chart, is the patient's history and the doctor's thoughts about what to do. It is important not only because it is ground zero for a patient's wellbeing, but also because it is a legal document. In our litigious and regulated world, charts are created with an awareness of how others might interpret them in the future.
Defensive documentation includes not only gathering the patient's subjective observations, but also documenting the objective diagnosis, the advice given to the patient, and the thought processes behind that and the follow-up plan. The well-known acronym for that is SOAP.
When a patient goes to a caregiver with injuries, is asked how he/she got injured and says that it was caused by someone else in medicine, the patient thinks the physician writes that down. A normal patient expects to get help for the injuries. A normal patient does not expect to be blacklisted for reporting that. A normal patient does not even know that is possible. Blacklisting is worse than the white wall of silence.
Currently doctors are not disciplined for failing to report unfriendly practices (see Dr. James Burt). They are not disciplined for refusing to help patients who have been injured by unfriendly practices (see Burt again). They are not even disciplined for taking advantage of a patient's trust in order to prevent him/her from getting help (see blacklisting patients).
Fortunately Beth Israel Deaconess Medical Center in Boston is getting ready (June 2009) to experiment with putting the physician's notes on line where patients can read their own notes. Patients will be able to see what actually got recorded. Patients already have a legal right to obtain their paper records, which is supposed to include notes (which easily can be lost for simply not provided when they don't want the patient to know something), but patients often have to wait months to get copies, often must pay a fee, and sometimes even have to go so far as to get a subpoena when the physician doesn't want the patient to see them. Online access would be easy and immediate.
Would physicians start keeping two sets of notes? Like an accountant who keeps one set for the IRS and the stock holders and another set for the criminals running the company? Of course. Perhaps most physicians won't, but the dangerous ones will of course.
Dr. Lawrence Garber, medical director for informatics at Fallon Clinic in Worcester. Fallon Clinic, said “I might write ‘Don’t forget to ask them about their visit to Spain.’ A certain magic happens at the next visit,’’ Garber said. “The patient thinks, ‘How great, this doctor cares about me enough to ask about my trip.’ ’’ Pulling back the curtain, he said, might destroy that magic.
That's part of why patients need to see the notes - to reduce the extent to which medicine is no more well understood than magic. Patients need to understand the reality so that they can be informed and intelligent consumers, not awed audiences at magic shows.
Dr. Lisa Gilbert, an internist in a Beth Israel Deaconess practice in Lexington said that she has a lot of concerns about sharing notes with patients online like that. Her biggest worry is that patients will have so many questions that she will get daily communications interrupting her from patients trying to understand the notes, like what does "SOB" mean in the notes? (Shortness Of Breath). And what does neoplasm mean? (Cancer).
She understand "online" means "on a computer" doesn't she?
Our response is to automatically include a common header or footer on every page that will provide thinks like a link to a list of abbreviations, perhaps to one already existing on line. In addtion, perhaps write, or have someone write, some macros so that the most common abbreviations are inserted with two keystrokes that automatically turn into the abbreviation posted as a clickable hyperlink that leads to its definition, a definition that has clickable links to more detailed information.
Caregivers routinly justify denying patients access to their own information with speculations about the patients being stupid and the information causing inconveniences for caregivers. Patients would appreciate if this were not done on the basis of mere speculation.
Beth Israel already makes lab and radiology results available to patients in their online medical record. Dr. Gilbert says she believes that patient access to that has improved care without increasing her workload. “Sometimes patients catch things that slip through the cracks,’’ she said. “People are just becoming much more savvy about healthcare and they want access to this information.’’
Dr. David Ives, who also practices in Lexington, said, “I might say in my notes that a patient’s weight is up another 20 pounds and that I counseled them on the increased chance of diabetes with age and weight gain. They might not hear that in the office. But if they read it, they might.’’
Smaller experiments allowing patients access to their doctors’ notes generally have been successful.
That's not speculation.
If all patients records were available online, when an injured patient went to a physician and explained that the injuries for which treatment is sought were caused by someone else in medicine, the patient would be able to see that no note was made of that. When that happened time after time, it might take less time for the patient to figure out what was going on and stop leaving his/her wellbeing in the hands of people who are protecting someone else at the patient's expense.
If their project does not go through, there still is the fact that HIPAA Privacy Rules require that a covered entity provide a patient with a copy of their medical records within 30 (and no later than 60) days of the patient’s request. No effective patient advocates were in the room when they negotiated that time frame, were they?
There are monetary penalties for failing to do produce the records in that time frame, but who is going to enforce that? In any case, 30 days is plenty of time to rewrite records after they have been requested. Patients should be suspicious anytime it takes more than two days for copies to be made of records.
The next time they negotiate that time frame, could I be in the room, please?