In April, the 21st Century Cures Act made it mandatory for US healthcare providers to give patients electronic access to most notes taken by their doctors and nurses. How has this new practice changed the doctor-patient relationship? A new article leaves us with some interesting takeaways:
● Jargon gets in the way. Medical jargon is often called out for the way it makes medical communication and knowledge less accessible for patients. This continues to be the case; author Elizabeth Preston reports that patients are often confused by specific medical terminology in their notes.
The jargon isn't just medical terms. It's also found in phrases like "The patient denies..." which is a typical phrase that doctors use to mean "The patient does not or has not..."
● Not all patients read these notes. Despite their potential uses and helpfulness, not all patients read the notes they now have access to. In some cases, this highlights barriers that keep patients from the full benefits of healthcare - including language barriers and access to internet at home.
● Doctors' notes can be offensive. Whenever any of us are gathering information, we tend to take shortcuts to describe things efficiently. And so, terms like "elderly" or "alcoholic" might show up in a doctor's quickly jotted description of a patient. Some patients may not mind this, but others have complained to doctors and healthcare centers about the use of certain terms.
Some of the complaints come from language that isn't inherently offensive - take the word "elderly", which at least one interviewed patient has complained about.
● Notes reveal doctors' biases. While the language a doctor uses to concisely describe a patient may not necessarily be offensive, it does reflect snap judgments that could influence their verbal exchanges and approach to care with a patient. For instance, why write down "elderly" instead of a patient's age?
Many doctors acknowledge this sign of bias and see the new transparency between them and their patients as a motivator for improvement.
● There are still a few problems to work out. Notable among these are privacy for teenage patients, whose parents can access their notes, and the fact that results and diagnoses that would normally be given to patients in a follow-up appointment or important phone call can often be read in notes first, which has caused a number of unprepared patients a great deal of distress. Hopefully, with time, measures can be put into place to fix these issues.
● Doctors’ workload hasn’t increased. Giving patients access to their doctor's notes opens up another way for things to become complicated. Doctors often struggle with keeping records of appointments while communicating with and helping patients. Now they may also find themselves receiving calls or messages regarding something they jotted down.
Fortunately, so far this hasn't become a widespread problem. And those who developed and encouraged sharing notes with patients believe, on the other hand, that the benefits far outweigh potential risks.
Among these benefits are increased knowledge for patients (or at least potential access to this increased knowledge) and a way to motivate medical professionals to think differently about their patients. When medical professionals consider the language they use to describe patients, they may also progressively lose or reconsider prejudices they might have had.
Additionally, using more neutral language will help new healthcare providers who consult a previous doctor’s notes approach a patient without judgment, as well.
Language really does have power. In one study cited in the article, for instance, participants were given notes about a fictional patient. Half of the group received records describing a patient who "refused" an oxygen mask. The other half of the group was given notes that said the patient was "not tolerating" the oxygen mask. The second group was more sympathetic to the patient and worked harder to find ways to manage his pain.
When you see it that way, sharing notes with patients could end up curing one of medicine's biggest ills: the bias that can block proper compassion and care.
Contact Our Writer – Alysa Salzberg