Clinician biases and stereotype threat

Implicit associations (unconscious, uncontrollable and automatic processes) of positive and negative attributes with particular social groups can influence clinicians’ judgements, leading to harmful stereotyping biases.12 Research suggests that negative implicit biases can affect the quality of health interactions and are associated with fewer signals of support and empathy towards patients representing some disadvantaged demographic groups, including racial and ethnic minorities, low-income, less educated and older patients.12 A distinct but related cause of communication breakdowns in visits might also be due to stereotype threat, a situational phenomenon that arises when individuals fear explicit and/or implicit stereotyping by others.13 Stereotype threat is characterised by a suite of physiological and psychological responses including anxiety, negative cognition and emotions, reduced working memory capacity, diminished effort and compromised performance on tasks. In face-to-face clinical encounters, it is hypothesised that stereotype threat may elevate patient anxiety, reduce participatory behaviour, and lead to delays or failures to follow-up on healthcare.13

Open notes might be viewed as extending the visit, potentially thereby elongating and strengthening patient–physician interactions before and after the pressures of the clinical encounter.1 3 4 It is reasonable to postulate that this perceived elongation of the visit through online access to notes may reduce anxiety, negative emotions and poor recall associated with stereotype threat.14 Indeed, a number of studies suggest that open notes may enhance relational aspects of care, especially among vulnerable populations.2–4 After a 12-month study, half of physicians surveyed (54%, 53/99) believed that patient satisfaction increased as a result of note access with a similar proportion (51%, 31/61) perceiving that patients trusted them more (36%, 22/61 did not know, and 38 did not respond).15 In another survey conducted in 2016 involving over 10 000 patients and their families, investigators found that patients who were non-white or less educated reported more benefits than their counterparts: while the numbers are small, 48% (121/253) of black patients and 53% (188/354) of Hispanic patients trusted their provider more after reading their notes, compared with 42% (2826/6763) of white patients (the majority of the remainder reported no change).3 Similarly, 47% (120/253) of black patients and 54% (190/354) of Hispanic patients reported strengthened goal alignment with their clinician after accessing their notes, compared with 39% (2611/6763) of white patients.3 Qualitative research also suggests that reading their clinical notes can help patients feel listened to, validated and understood.16

Language proficiency

Limited language proficiency is associated with patient-reported communication problems, including frustration, confusion and lower overall ratings of quality of care.17 Patients experiencing language barriers in clinical visits are at higher risk of treatment non-adherence and adverse reactions to medications, with associated harms that may increase when patients misunderstand why medications have been prescribed.18

Although some health organisations provide portals in a range of languages, clinical notes are typically offered in one language only. Online machine translation, while improving,19 is subject to significant error rates, particularly if translating complex syntax and vocabulary in notes. Nevertheless, access to open notes appears to help some patients who speak another primary language by allowing them, or a care partner, to read and recall information.2 6 In a recent US survey, among patients whose preferred language was not English, 75% (1064/1420) reported that reading their notes helped them understand the rationale behind prescribed medications, compared with 64% (10 787/16 966) of primary English speakers.6 Among patients who did not speak English at home, 77% (357/462) reported reading their notes as extremely important for remembering their care plan, compared with 66% (13 700/20 780) of English speakers.2 Similarly, 68% (315/462) of survey respondents who did not speak English at home reported that their notes were extremely important for preparing for clinical visits, compared with 50% 10 466/20 780) of their counterparts.2

Health literacy

It is estimated that, on average, patients do not recall about half of the health information communicated during visits, with this figure likely higher among those with lower levels of health literacy.20 Defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”—health literacy is now recognised as a driver of health disparities.21 Health literacy depends on many mediating factors, including reading skills, level of education, knowledge about preventive healthcare, and the ability to access and use health information effectively, such as following up on test results and referrals.

By offering patients access to records that document what was discussed during visits, open notes may provide a novel forum for augmenting health literacy among some patients. Surveys show that reading notes is a considerable asset in improving patients’ awareness about medical information, especially among non-white or less educated participants.2 3 For example, in a recent survey, 49% (89/181) of black and 55% (138/252) of Hispanic participants reported that reading their notes helped them to understand the reason for tests, compared with 40% (2025/5079) of white respondents.3 Similarly, 40% (72/181) of black and 36% (91/252) of Hispanic patients reported that access to notes helped them remember to get tests done, compared with 23% (1148/5079) of white participants. In addition, among participants with a high school education or less, 48% (459/952) reported that reading their notes helped them understand the reason for tests compared with 38% (1116/2934) and 21% (610/2934) of patients with a masters or doctoral degree.3 A third (36% (339/952)) of those with high school education or less responded that open notes helped them to remember to get tests done, compared with 21% (610/2934) of patients with a masters or doctoral degree.

Reinforcing these findings, patients describe in qualitative studies how access to their notes improves awareness of their health problems. For example, in a recent qualitative survey involving predominantly minority patients at a safety net clinic, participants reported appreciating reading the detail in their clinicians’ notes and described using open notes as a reference for medication information and follow-up plans. As one patient noted: “I like my summaries because I can go back and revisit them”.16 While open notes may not help all patients, such as those with very reduced reading skills, they may help some patients with marginal and limited literacy. Moreover, in a large study of patients who read notes, 38% (8588/22 753) reported sharing them with others, predominantly family members.2 It is reasonable to postulate that among those with severe literacy or language limitations, sharing access to their open notes with a family member or care partners may prove important in helping them to understand and act on their health information.22

Limitations

While evidence of the benefits of open notes are promising, current findings are largely dependent on self-report. This can be unreliable, and methodologically robust studies have so far been conducted in only one language and are restricted to a few medical centres and hospitals, limiting the generalisability of results. In addition, surveys may be biased in favour of those participants who may already be more engaged with patient portals and therefore more likely to respond to surveys. Finally, as noted, disadvantaged populations have lower adoption rates, presenting a major residual barrier to harnessing the potential benefits of open notes.5