Patients' perceptions of their doctors' notes and after‐visit summaries: A mixed methods study of patients at safety‐net clinics

Abstract Background Patients are increasingly offered electronic access to their doctors' notes, and many consistently receive paper After‐Visit Summaries. Specific feedback from patients about notes and summaries are lacking, particularly within safety‐net settings. Design A mixed methods study Setting and Participants Patients with poorly controlled diabetes attending two urban safety‐net primary care clinics in Washington State. Methods Patients read their own most recent clinic note and After‐Visit Summary, then completed a brief survey followed by a focus group discussion (3 groups in a large general medicine teaching clinic and 1 in an HIV/AIDS clinic) about their perceptions of the clinic note and After‐Visit Summary. Results Twenty‐seven patients participated; 70% were male, 41% were Black, 48% were unemployed or disabled, 56% reported fair/poor health, and 37% had accessed the electronic patient portal. A majority of patients felt their note content was useful (89%); a minority reported that their notes were not accurate (19%), had too much medical jargon (29%), or were too long (26%). Themes identified from the discussions included reliance on the provider to explain confusing content; a desire for more rather than less detail; and perceived inaccuracies, particularly in heavily templated notes. In each focus group, one or more portal users were enthusiastically willing to teach other patients. Conclusions The majority of focus group participants at this safety‐net site had not accessed the electronic patient portal, but those who had were willing to promote the portal benefits and assist others. Patients identified specific opportunities to improve clinic notes and After‐Visit Summaries.


| INTRODUCTION
To date, 15 million patients at more than 40 different medical centres, clinics, or health networks in the United States now have electronic access to their own notes. 1,2 Historically, doctors' written patient progress notes serve multiple purposes including the following: recording the patient's plan of care; communication between health professionals; a legal record of the encounter; and documenting care and services provided to the patient. 3 Increasingly doctors' notes can be accessed via secure online patient portals and allow a platform for communicating with patients.
Patients who read their notes report having a better understanding of their health, 1,4 and relatively few patients are concerned about privacy (37%) 1,5 or feel that reading their clinic notes causes confusion, worry or offence (1% to 8%). 1,4 Qualitative feedback from patients about their note content has been positive, but patients in safety-net settings may have different perceptions of their doctors' notes. 6 Also, vulnerable populations are less likely to access patient portals, 7 which raises concerns about whether this technological intervention for engaging patients might actually increase healthcare disparities due to a "digital divide." [8][9][10] A better understanding of electronic note access among vulnerable populations, who may have relatively limited computer access or lower health literacy, is needed.
In addition to doctors' notes, After-Visit Summaries are another avenue for communicating health information to patients. This document, summarizing actionable instructions for patients after an office visit, is postulated to improve communication and coordination of care, and can be shared with patients' family members or other health-care providers. 11 After-Visit Summaries are provided to approximately 50% of patients completing outpatient visits in the United States, 12 including via electronic access to the health record. A study of patients' perceptions of After-Visit Summaries among predominantly White, college-educated primary care patients identified multiple opportunities to improve the usefulness of the content. 13 Another study among a majority Hispanic population found that patients liked receiving a clinical summary, and that the quantity of content did not affect patient recall or satisfaction. 14 Feedback from safety-net populations about use of electronic portals, and both doctors' note and After-Visit Summary content will help optimize opportunities for communication and engagement.
Prior to obtaining electronic access to doctors' notes, focus groups among a diverse, vulnerable patient population in 2010 found that patients' knowledge about their own health record was low. 15 While they responded positively to the idea of gaining access to their electronic clinic records, some worried about loss of privacy and disruption of the patient-provider relationship. 15 Now that these patients have had electronic access to their own doctors' notes for over 2 years, we conducted a follow-up study using mixed methods, consisting of four focus groups and a brief survey to obtain patients' feedback about reading their own doctors' notes and After-Visit Summaries, in addition to self-reported use of the electronic patient portal.

| Patient recruitment
We used purposive sampling for participant recruitment. Eligible patients had poorly controlled diabetes (haemoglobin A1C levels > 9), as identified using clinic diabetes registries. Diabetic patients were chosen because the clinics were specifically interested in patients' experiences with their diabetes care. We excluded patients who had not had an encounter with a provider in the clinic within the preceding 12 months or whose primary language was not English. Among eligible diabetes patients, clinic staff members then identified patients who were likely to attend and actively participate in a group discussion. Research staff members attempted to contact 81 patients by phone and successfully contacted 43 of these patients; 31 expressed interest in participating, and 27 attended the groups.

| Human subjects protection
The University of Washington Institutional Review Board deemed the focus groups exempt from review as the goal was to improve clinical care delivery. The purpose of the focus groups was reviewed verbally with the participants, and each participant provided written informed consent. Transportation was reimbursed, lunch was provided, and each participant received a $25 grocery coupon.

| Patient questionnaire and focus group discussions
Before the focus group discussions began, we asked participants to read a printed copy of their own most recent clinic note and After-Visit Summary from their primary care provider. We then asked patients to complete a survey that included demographic questions and five-point Likert-scale questions evaluating their use of the electronic patient portal and their perception of their printed doctor's note and After-Visit Summary (Appendix S1).
Three of the authors (BB, SJ, LR) facilitated the groups, which were audio-taped and lasted approximately 2 hours. The focus group inter-

| Analysis
Three study authors (BB, SJ, JK) reviewed the transcribed focus groups and performed iterative rounds of analysis using the immersion-crystallization technique 19 to identify key themes; we used the principles of (i) "grounded theory" to generate theories from participants who have personally experienced clinic notes and After-Visit Summaries, and (ii) "participatory action research" to break down barriers between facilitators and participants to produce suggested improvements to clinic notes and After-Visit Summaries. 20 Ideas were organized by theme along with representative quotations. The investigators met to resolve discrepancies in their independent reviews, build consensus around key domains and match representative quotations to appropriate themes. Only themes that were independently identified by all three reviewers are presented. Summary statistics of participant demographics and opinions were calculated using SAS 9.4 (Cary, NC). Table 1 shows patient demographics and self-reported health status for the 27 participating patients. Seventy per cent of participants were male, 41% were Black, 48% were unemployed or disabled, 37% had a high school education or less, and 56% reported fair/poor health.

| Electronic patient portal use
About half of 27 focus group participants reported not previously having used the electronic patient portal (n = 14 had not accessed, n = 10 had accessed, n = 3 did not respond). The most commonly reported reason for not using the portal was lack of access to an electronic device (n = 7), while other reasons included concern about privacy (n = 4), lack of interest (n = 2), concern that the contents would be worrisome (n = 2), or too complicated (n = 1), or other (n = 3). Among the 10 portal users, the most common uses were to view laboratory results (n = 9), to view visit notes (n = 8) and to send messages to the care provider (n = 6). Less common uses were to view radiology results (n = 3) and to request pharmacy refills (n = 2). The majority of patients felt the content of both the notes and After-Visit Summaries were useful and clear, while a minority noted opportunities for improvement ( Figure 1).

| Themes related to accessing the electronic patient portal
The themes identified from the discussions about accessing the portal included two barriers to using this tool, and a potentially effective strategy to facilitate portal use.

| Lack of access or familiarity with technology
Many participants expressed that a lack of access or familiarity with technology was the main reason they were not using the electronic patient portal. These patients expressed not having access to a computer; not knowing how to use technology; lack of interest in learning how to use computers; or preferred to obtain information in ways that they were familiar with. Some participants with barriers to computer use expressed strongly that they had no interest in it, while others were interested in learning how to access the portal and their information.
T A B L E 1 Demographic characteristics and self-reported health status of patient participants

| Concerns about privacy or security
Additionally, some participants were concerned that use of the electronic patient portal would potentially compromise the privacy and security of their personal health information, and some did not like the idea of communicating with staff members they did not know.

| Themes related to perceptions of the doctor's note
Three major themes surfaced when discussing the doctor's note.
Patients found parts of their notes difficult to understand, often relied on providers to interpret their notes, but still preferred that doctors' notes remain detailed rather than being shortened or simplified.

| Themes related to both the clinic note and After-Visit Summary
Two additional themes were identified regarding both the doctor's note and the printed After-Visit Summary. Namely, patients described using both clinical documents for their own reference and shared them with others; and they also identified inaccurate or outdated information in both clinical documents.

| DISCUSSION
Over one-third of the focus group participants attending these safetynet clinics had accessed the electronic health portal. While many expressed difficulties with access to computer portals and reservations about computer use, others were vocal advocates for the portal.
Enthusiastic users volunteered to assist others with electronic access and espoused the benefits of being able to see and use their own information. Another key study finding was that participants reported the content of their recent doctor's note and After-Visit Summary was useful (89 and 93%, respectively) on the survey. However, during group discussion, common themes included identification of inaccuracies and confusing medical jargon. This suggests that the more There is concern that open access to electronic health information may augment existing health disparities by widening the "digital divide" between those with and without Internet access. 21 Poor health outcomes are more likely when patients are elderly or have lower socioeconomic status, education levels and health literacy; these attributes are also associated with lack of Internet access. 22 In addition, a recent US study found that patients who are Black people, Hispanic, or who have a lower education level are less likely to report being offered electronic access to their health information by their health-care provider. 23 Thus, the patients who stand to benefit the most from access to their health information have multiple barriers to surmount in obtaining it. Many of our focus group participants described lack of online access and/or apprehension about technology use, and many had not accessed the electronic portal. Given these barriers, further work is required not only to provide instruction for vulnerable populations in use of electronic patient portals, but also to standardize and expand how patients are offered access so that diverse and vulnerable patient populations are consistently invited to access their records online.
Within each focus group one or two individuals strongly advocated the benefits of using portals and offered to help interested non-users. In a qualitative study in the UK patients' interactions with health-care providers were thought to be improved by access to health records, 29 which our participants also noted. Patients relied on their providers to interpret unclear concepts or medical jargon. As electronic health records evolve, options for including definitions for commonly used medical terminology and abbreviations will be useful for some patients; and some patients will always rely on verbal communication to clarify the plan, but can use the written notes or summaries as a vehicle to share the information with others who are involved in their care. Augmenting health literacy by building patient/provider trust and communication with transparent notes will likely benefit all populations, including those in the safety-net and with low literacy.
Patients identified inaccuracies in their doctors' notes and After-Visit Summaries, a finding consistent with prior OpenNotes research, 30 which demonstrates a distinct advantage of allowing patients to review their records. As patients' access to their online health record increases nationally, gathering their feedback on the content of clinic notes has the potential to improve the accuracy of clinical documentation, promote patient engagement, and improve overall patient outcomes. [31][32][33] One opportunity for decreasing errors includes patients directly entering or editing content into their own electronic record.
A recent study in which patients at a safety-net clinic were asked to type their agenda for their clinic visit into an electronic health record demonstrated that patients were interested and able to do so. 34 Redesign of the way that doctors' notes and After-Visit Summaries are constructed by the electronic health record is another potential avenue for decreasing inaccurate information. Auto-generation of notes and After-Visit Summaries with templates and pre-populated data are a common feature of electronic health records, including the one used at our study sites. Focus group participants noted inaccuracies primarily in the problem list and medication sections of their documents; fields that are typically "pulled in" from chart sections that are cumbersome for doctors and staff members to modify. Our findings support the need to re-engineer the clinic note and physician workflows in electronic records, so that the data are easily modified for accuracy. 35 Electronic health records should support efficient physician workflows for maintaining correct health data, and partner with patients to ensure accuracy, which subsequently would improve care delivery and prevent avoidable errors.