The ‘open notes’ revolution

While allowing patients to view their medical records is a move toward greater transparency, some doctors have concerns

On 5 April the 21st Century Cures Act, which gives legal effect to ‘open notes’ in the US, came into effect. It states that patients must have fast, electronic access to consultations, discharge summaries, history, physical examination findings, imaging narratives, laboratory and pathology report narratives, and procedure and progress notes.

Proponents of open notes, which gives US patients the right to read everything their doctors have written about them, say that, on a broad level, it restores a sense of control for patients. And research has shown that minorities, older patients, those with fewer years of formal education, report more benefits of reading their notes than everyone else.
While introducing such a sweeping change across the US health system is a big event, there has been a push towards open access for patients elsewhere. In Sweden, a national open notes programme now has 7.2 million patient accounts in a country of 10 million people.

Here in Ireland, the national epilepsy electronic patient record (EPR) has recently added an electronic patient access portal (ePortal). The ePortal aims to provide patients with access to, and engage them as co-authors of, their epilepsy care record. Researchers at the Science Foundation Ireland FutureNeuro Research Centre in the RCSI are looking at people with epilepsy, families, and healthcare practitioners to understand what they value about the ePortal. Early findings show that patients feel more empowered when they have ePortal access to their epilepsy care record and while clinicians express some trepidation regarding potential impact on work practices, they also appreciate how it can help improve their understanding of what matters to their patients.

However, some doctors have concerns about the development. Understandably, many doctors are at first resistant, fearing this practice innovation will lead to increased confusion and anxiety among patients, possibly generating complaints. Others worry that the change will increase their workload as clinicians tailor notes for patients and make themselves available to answer related questions.

According to a 2020 poll of over 1,000 physicians in the US carried out by the online journal Medscape, a majority (56 per cent) anticipate that they will write notes differently, knowing that patients can read them. Nearly two-thirds (64 per cent) believe that this change will increase their workload. However, actual practice suggests that this is true for about a third of practitioners, who report “spending more time on documentation”.

Extensive patient surveys conducted in the US and Sweden reveal that the vast majority of patients consider open notes a good idea. Only small numbers – about three-to-five per cent – report being very confused or more worried after what they read. Most surveyed patients view access as very important for taking care of their health and feeling in control of their care plan. About one-in-five who access their notes spot errors. With more eyes on the charts, reading notes is now looked at as transformative for patient safety.

It seems that some patients – those with more serious or chronic conditions – are more likely to peer into their files than others. A recent study of nearly 6,000 medical oncology patients at the University of Wisconsin confirms that view. Patients with incurable metastatic disease were much more likely than those with early-stage, curable disease to read notes. Notably, younger patients were more likely than older ones to access notes, perhaps reflecting more familiarity with technology.

For doctors who are in the habit of dictating clinical notes in front of patients and sending them copies, open notes will pose less of a challenge. Others are more trenchant about the status quo, with one doctor commenting on a Medscape article asking: “Are we supposed to change the medical language that allows us to communicate with each other so patients would understand it?” Stating they had no issue with patients having the right to read what we write in their medical records, they added “don’t force us to use a non-medical language to document a medical issue”.

This correspondent was certainly not going to change how they wrote patient notes. I wonder how the new practice will play out in Ireland, when open notes inevitably crosses the Atlantic?