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.