Who own’s the content of our medical files? Despite
legislation which states that patients are the owners of their files (or of the
data that’s held within), our traditional paternalistic culture makes these
regulations a toothless tiger: getting hold of your files is a tangle of red
tape. Over the last one or two decades, patients have felt empowered to request
hard copies (ie photocopies) of the content of their files, for different
reasons, one of them being that they want their own copy just in case the
originals get lost, for any reason, including misplacement, fires or flooding
of basements, a common location for Medical Records departments.
With the coming of electronic health records, the need to
have paper photocopies of our files feels Jurassic: we want either CDs, DVDs
or, better still, secure internet or private network access to our records, in the same way we can keep
track of our bank accounts, eBay, payments, taxes, social security and other
information related to us.
But when it comes to reading what our doctors have written
about us and our health, we enter tricky business. On one hand, doctors can be
anything between thorough or poor documenters. In the times of virtually illegible
handwritten notes, extricating what was written freestyle narrative can be an
ordeal even for the author! On the other hand, with the advent of
keyboard-typed data and information, readability ceases to be an issue, to be
replaced by data content. Here we arrive at a crossroads: would doctors write
notes differently if they were aware that their patients would be reading them
if they wanted? To make matters more complicated, are notes written by your
general physician to be regarded in the same eye - and caution - as those generated during a visit to your
psychiatrist? Or your oncologist?
Fortunately, these issues have been tackled in a real-world
situation. The idea of having patients read their doctor’s notes tracks back to
an article in 1973 published in the New England Journal of Medicine, but it was
only recently in 2010, that a trial was done enrolling a selected group of
physicians in Massachusetts, Pennsylvania and Washington state, encouraging their patients to read their doctor’s notes and to measure the effect of this
groundbreaking policy. The results were an absolute win-win. Although most patients
were more positive than their doctors prior to the test of being able to read
their doctor’s notes, at the end of the study, even more patients reported being better informed about their illnesses, improved compliance with taking their prescribed
medication, less concerned about their diagnoses, didn’t care much if their
doctor had good or poor narrative skills and even identified some mistakes in the
documentation that needed correction. Although doctors were rather worried that their
writing style, including acronyms, would need to change significantly, only a
minority (ten percent) did proceed to change. Knowing that their
patients would be reading the notes they were writing, made them more careful
of certain wording and issues of style. At the end of the study, virtually no
doctors wanted the policy of open notes to stop and the policy was expanded
within and to other organisations.
At present the OpenNotes initiative (OpenNotes.org) encompasses
more than 40 million patients in many states of the USA and in the province of
Ontario in Canada. In the UK, an initiative known as Patients Know Best (PKB:
PatientsKnowBest.com) gives access to their files and doctor’s notes for those
covered by the NHS. Many European countries with interoperable electronic health records provide access to the content of their files to patients, including doctor's notes, although they're not part of the OpenNotes initiative. Most countries with a policy of transparency, are giving access to
persons to whatever data related to them is stored in public, private or
international organisations.
Healthcare should be no different.
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