Open notes in cancer care: coming soon to patients

COVID-19 has disrupted care for people with cancer.¹ Postponed treatments, physical distancing, and the vulnerabilities of infection compound the stress and uncertainties already felt by patients and their carers, as they are learning to negotiate the move to telemedicine. By telephone or video, telemedicine allows patients to receive care when attending clinics is not safe, but remote consultations might not allow the same opportunities for communication. However, promising research suggests that rapid and convenient online access to electronic records, including the notes written by clinicians (so-called open notes), might help to support and empower patients.2, 3 Most people in the Nordic countries are already offered open notes using patient portals and this practice is growing worldwide.⁴ From Nov 2, 2020, new federal laws in the USA mandate that providers must extend open notes to all patients, with a few permitted exemptions. Drawing on findings in oncology settings, we outline what this innovation might mean for patients and oncologists.

Many physicians worry that access to notes in oncology will increase confusion and anxiety among their patients;⁵ however, these concerns do not appear to be proven. Since 2009, the practice has been implemented at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with no reports of patient harm or legal action. In a US survey on radiotherapy, 53 (60%) of 88 oncology patients accessed their notes when given the option, and all of these patients found the notes useful.⁶ Commensurate with multiple surveys across primary care and other specialties,³ 51 (96%) of 53 patients receiving radiotherapy for cancer reported improved understanding about their diagnosis, 50 (94%) had a better understanding of the treatment risks and side-effects, and 48 (91%) had learnt important information that they had missed during clinical visits. Although six (11%) patients described feeling more worried after receiving their notes, whether their worries were a result of the content of the notes or the access itself was unclear. Moreover, three (6%) patients reported being more confused after receiving their notes and two (4%) patients regretted reading their notes.

Qualitative research reinforces these findings. In Uppsala University Hospital, Uppsala, Sweden, open notes have been implemented since 2012, and patients have appreciated the opportunity to feel more in control of their care than when they did not have access to open notes, with many citing rapid access to results as crucial for their mental wellbeing.⁷ As one patient attested, “I'd rather sit and cry at home… rather than having to sit in front of a doctor, shocked without the ability to ask questions”. Patients questioned the assumption that accessing notes was worse than the prospects of a cancer diagnosis or of living with the illness. As one individual noted, “if we can manage to have all of these cancer diseases and to live with it, then we can handle reading about it”.

How do oncologists feel about the practice of using open notes? In a study done 6 years after the implementation of open notes at an oncology department in Uppsala University Hospital, physicians were divided on whether patient access resulted in more time writing notes, with 37 (58%) of 64 physicians reporting that documentation took longer since the implementation of open notes.⁵ Notwithstanding, 47 (73%) physicians believed that patient access to oncology notes was a good idea, with 45 (73%) physicians perceiving that patients felt they had more control of their care. These findings echo the positive experiences of non-oncology clinicians, now replicated in several large-scale surveys.⁸ Before implementing open notes, many oncology physicians worried that the notes would become less detailed, thereby reducing their usefulness. However, several analyses indicated no evidence exists of objective changes—eg, word length, number of words per sentence, or the positive or negative emotional tone—to oncology documentation after patient access was permitted.⁹

Although the findings are encouraging, the possibility of response bias in surveys and the restriction of studies to a few medical centres leaves some uncertainty and unanswered questions. For example, does learning about a cancer diagnosis online affect a patient's trust in clinicians? And at what age should minors be given full access to oncology notes?

Nevertheless, the innovation does offer new opportunities for communication. Open notes might prove particularly valuable in cancer care, in which misunderstandings between patients and clinicians about the risks and goals of treatments are especially common.¹⁰ Advancements such as incorporating so-called tooltips into online documentation—ie, computer graphics that provide pop-out hover boxes of information—could also provide patient-friendly definitions of specific medical terminology without burdening physicians or compromising the quality of records. Oncologists might want training in using clear or supportive language. Patients might also need advice on portal usage, and on the benefits and risks of accessing oncology test results and notes online. In a modest yet meaningful way, this practice might help to empower and signal respect to patients facing fear, unknowns, and life-changing circumstances.

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