Lack of easy access to personal health records is associated with adverse consequences for patients, writes Charlotte Blease
“The cancer might be stage 1b. Then again it could be 3b.”
“Let’s check Google again.”
This was the patter of daily, and nightly, conversations between my partner, H, and myself over a two-week period. Diagnosed with stomach cancer, H could recall scarcely anything the oncologist said. To fill in the knowledge gaps, we did what every doctor advises against—we turned to Dr Google. H also requested copies of his medical records—several times. As we waited, worried, and felt confused, the internet offered no concrete answers, but it did help us claw back some semblance of control. At least now we had information on the treatments and prognoses for stomach cancer—even if we didn’t yet know the details of H’s case.
Not everyone with a cancer diagnosis experiences the frustration of not being able to look at their medical notes and think through the implications of the information documented there. In the USA and Nordic countries, patients are offered real-time, online access to their clinical records—including lab and test results and their doctors’ notes (“open notes”). Recently, much attention has focused on the implications for patients and clinicians of this practice innovation. But another conversation has been overlooked. Denying patients’ online access to their medical information carries consequences too. We need to talk more about “closed notes.”
Legally, patients in many countries have the right to request copies of their medical records. However, as my partner and I experienced, the process is cumbersome, time-consuming, and socially awkward. At a time when he should have been thinking only of himself, H was worried that his doctor would think negatively of him for daring to seek more information about his condition. Emails to his busy doctor went unanswered, and this added to his nervousness. Closed notes unquestionably heightened his anxiety, and intensified confusion about the future. H recognized his doctor was overstretched, but felt worthless and frustrated when nobody had time to reply. By obtaining information about our sensitive internet searches about stomach cancer, Google seemed to be the only winner in this scenario.
H’s experiences are not unique. Patients misremember around half of what their doctor tells them, and recall is worse when patients are in shock. Studies show that “scanxiety”—the distress felt by patients waiting for test and scan results—is real, and dissipates when patients get their results. Among patients who lack ready access to their results and clinical notes on how to interpret them, the wait is protracted and stressful. In the current system, however, doctors don’t tend to focus on the adverse effects on patients of “closed notes.” Perhaps this is because it is the current convention in most parts of the world. And patients seldom complain, as most are resigned to a lack of access to personal health information and test results because it’s long been “how things are done.”
Reflecting on this customary practice invites important ethical questions. Closed notes are reliant on single-shot, miss-it-and-you-miss-out disclosure of information by doctors to their patients. While most are now copied into clinical letters sent to their primary care doctors, not all are and there is no onus on doctors to write notes which are easily understood by patients. How does this affect patient empowerment, wellbeing, or patient-doctor trust? What is the impact in terms of patient harm? And what do closed notes do for justice in healthcare delivery?
H was in a relatively privileged position. But despite being well-educated and fluent in English, he still struggled to remember everything his doctor said. Among patients from other demographic groups—minorities, people with low-incomes, older people, those suffering from multiple chronic conditions, or patients who don’t speak the same language as their doctor—poor communication and misunderstanding is even more likely. Patients from lower socio-economic groups, and those from racial or ethnic minorities, may experience anxieties related to perceived or anticipated prejudice potentially further compromising engagement and medical dialogue. Older patients may suffer from impaired memory making it harder to recall recommendations and next steps. People with multiple chronic illnesses may simply have too much information to remember. Patients whose first language differs from their doctor’s are also at higher risk of misunderstanding their diagnosis and treatment, resulting in treatment non-adherence and adverse reactions to medications.
Open notes are the solution to important problems that have been overlooked and downplayed by health professionals. Affording patients digital access to their own health information allows them to extend their engagement with the information provided at the clinic visit, and supplement the communication pitfalls of time-constrained face-to-face or virtual appointments.
In multiple studies, the majority of patients with experience of open notes report that reading their notes is very important for feeling in control of their care, remembering their care plan, and understanding why medications are prescribed. Patients report trusting their provider more, greater goal alignment, and teamwork. These benefits are reported most often among patients who are older, non-white, those with fewer years of formal education, or do not speak English at home. Older and chronically ill patients, in particular, appreciate the opportunity to share their notes with family and friend caregivers.
Three years after his initial diagnosis, H still cannot access his test and clinic visit notes online. Every oncology check-up is an anxious experience made worse by inability to read his medical information. Closed notes are an inherited structure in healthcare, but this doesn’t make them right. Or in the memorable words of one patient, “If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it.”
Charlotte Blease is a philosopher of medicine and interdisciplinary health researcher, and Keane Visiting Scientist at General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts. Twitter: @crblease
Competing interests: none declared.
Patient consent obtained.