Our patients should be allowed to examine their medical notes
The US will grant access to test results and referrals, and a doctor’s exact words can be read
Regarding the new Open Notes programme in the United States, Dr Charlotte Blease told The Irish Times: ‘On a broad level, it restores a sense of control for patients.’ Photograph: iStock
If there is one health system in the world that is synonymous with lack of progress, it’s the health service in the US. Despite huge spending, health outcomes are patchy at best. And it’s been difficult to maintain what progress has been made – witness president Donald Trump’s repeated assaults on former president Barack Obama’s Affordable Care Act.
So it is with some disbelief, but also admiration, I bring you the news of an important breakthrough in US healthcare: from next April (it was originally scheduled for this week but postponed due to the pressures of Covid across the health system), every patient there will have the right to access their medical notes online. This is a huge development; patients can not only access their test results and referrals, but they can see the very words written about them by their doctors.
The idea of patient access to their clinical health information has succeeded in harnessing bipartisan support in the US Senate and House of Representatives. Dr Charlotte Blease, an Irish researcher with Open Notes, says the timing has particular relevance. “During the pandemic, with the added risks of missed appointments and errors driving excess mortality, this is a huge win for patients,” she told The Irish Times. “On a broad level, it restores a sense of control for patients. And research shows, minorities, older patients, those with fewer years of formal education, report more benefits of reading their notes than everyone else.”
The original brainchild of Dr Tom Delbanco, the John F Keane and family professor of medicine at Harvard Medical School in Boston, with whom Dr Blease works, Open Notes is set to bring big changes to medical practice. The 21st Century Cures Act, which gives legal effect to Open Notes, 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.
Some doctors have concerns about the development. In fairness to them, it’s a sea change in practice to know that the exact words you have used in a consultation that morning can be read by your patient at lunchtime. 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 workload as clinicians tailor notes for patients and make themselves available to answer related questions.
During our own medical crises, fast access to our health information helps us to restore control
But Dr CT Lin, chief medical information officer at UCHealth in Denver, says the change requires “some letting go of old traditions” in medicine. He summarised the experience at the University of Colorado cancer centre, which has allowed patients to have access to oncology notes for the past five years: “No issues and highly appreciated by patients. We have nothing to fear but fear itself.”
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 3 to 5 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.
As Dr Blease notes, “reliable, up-to-the-minute health information is critical to the ongoing efforts to control Covid-19. Transparency in communication, and trust in health experts, enhances our understanding of the crisis, helping us to better adhere to guidelines. And what is true at the level of public health also applies to us as individual patients. During our own medical crises, fast access to our health information helps us to restore control.”
Will we ever see an Open Notes policy in the Republic? Sláintecare, the 10-year reform programme for our health system, is the obvious vehicle with which to ensure future access to their medical notes for Irish patients.