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Sharing clinical notes with patients

The NP perspective

Adelman, Deborah S., PhD, RN, NE-BC; Fant, Catherine, PhD, RN-BC; Conner, Debbie Nogueras, PhD, ANP/FNP-BC, FAANP

doi: 10.1097/01.NPR.0000554676.56859.bb
Feature: PATIENT PORTALS
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Abstract: This article outlines a research project conducted to learn more about NPs' attitudes regarding sharing clinical notes with patients through a patient portal. Perceptions were positive overall. To achieve effective health outcomes, patient and family engagement is essential. Shared clinical notes provide an opportunity to achieve these goals.

This article outlines a research project conducted to learn more about NPs' attitudes regarding sharing clinical notes with patients through a patient portal. Perceptions were positive overall. To achieve effective health outcomes, patient and family engagement is essential. Shared clinical notes provide an opportunity to achieve these goals.

Deborah S. Adelman is a professor at Purdue University Global's School of Nursing, Chicago, Ill.

Catherine Fant is an adjunct professor at Walden University's School of Nursing, Minneapolis, Minn.

Debbie Nogueras Conner is a professor at Franklin University's College of Health and Public Administration, Columbus, Ohio.

The authors have disclosed no financial relationships related to this article.

Figure

Figure

Patient portals have been put in place at many healthcare facilities to assist organizations in meeting the meaningful use requirement of increased patient engagement. The types of data and functionality patients can access through the portals vary but typically include test results, a medications list, educational materials, appointment scheduling information, and the ability to order refills and communicate with their healthcare professionals.1 However, until a few years ago, clinical notes were not readily available to patients.

Over the last several years, researchers have encouraged healthcare providers to share clinical notes with patients. The first initiative started in 2010 when researchers conducted a study in primary care settings in three large medical systems.2 This initiative was called OpenNotes and it continues to support institutions today as they increase patient engagement efforts. OpenNotes provides public domain materials to clinicians to assist them as they begin sharing clinical notes with patients.3,4

The 2010 OpenNotes study examined the attitudes of patients and physicians both prior to implementation of sharing clinical notes and 1 year later. The researchers found that the patients' attitudes both before and after were over 90% positive, although the primary care providers were less enthusiastic prior to sharing (69% to 81%) and much more enthusiastic after implementation (85% to 91%).2 Since then, almost 29 million patients have gained access to their clinical notes.4

The trend of sharing clinical notes with patients through patient portals has grown over the years. However, as more data become accessible to patients online, new issues regarding this increased access have surfaced. For example, patients can easily access their health information, but they may not necessarily understand or agree with the content in their clinical notes. In addition, legal issues may impact future data sharing, as laws have not kept up with the technology changes related to patient access to their healthcare records.5-7 To date, all states in the US have had at least one institution in which primary care providers reported sharing clinical notes with patients.3

As this trend gains acceptance, understanding the mindset of clinicians about sharing their clinical notes is important to the future of patient care. Although sharing clinical notes started in primary care settings, this practice is slowly moving to other ambulatory clinical settings as well as the inpatient setting.8 The focus of research in this area has addressed physicians who share clinical notes; minimal attention has been paid to NPs.9-11 Understanding how this large segment of the healthcare team perceives sharing clinical notes with patients has driven the research study presented here.

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Literature review

Attitudes about sharing clinical notes have been primarily positive from both clinicians and patients.5,6,8,9,11-14 Sharing clinical notes has resulted in improved medication adherence, better understanding of why a medication was prescribed, improved communication, increased understanding of plans of care and health status, improved patient and family engagement in healthcare, and improved patient willingness to continue accessing their clinical notes.5,9,11-13,15-17 Other positive outcomes resulting from shared clinical notes have included greater involvement of families and/or caregivers with the patient's care, strengthening of the patient-clinician relationship, a stronger sense of control over one's healthcare, better patient preparation for the next visit, improved coordination of care, patient safety, and improved patient self-care.5,8,9,11-13,17,18

Related clinician-identified concerns include increased workloads for providers, increased concern and worry by the patients, privacy and Health Insurance Portability and Accountability Act issues, and possible lack of understanding of content by the patients.5,9-12 However, clinicians noted many of these concerns prior to sharing clinical notes and changed their attitudes after doing so.9

Some clinicians worried about changing how clinical notes are written knowing the patient was going to read them. This was of particular concern for clinicians providing care for patients with behavioral health issues, substance use disorders, obesity, and cancer.9 Nevertheless, there is a growing willingness to share mental health records. A 2017 pilot study in which patients were given access to their mental health progress notes found that sharing was helpful to the patients and showed no signs of negative impact.19

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Purpose

The purpose of this study was to understand NPs' perceptions of sharing clinical notes with their patients using a descriptive quantitative methodology with two open-ended questions. Many clinical practice sites use patient portals, but not all share clinical notes or grant the patient complete access to their health information through the portal.20 However, this is changing as more patients are accessing their health information through patient portals and because of the growing need for big data on population health.21 The existing research has addressed how patients, physicians, and other healthcare professionals perceived, used, and felt about sharing clinical notes with patients through patient portals, but does not specifically address NPs.6,8,11,13,22 Because NPs generally work in practice settings that increasingly use patient portals, it was deemed important to understand their perceptions related to clinical notes sharing to guide future research in the area.

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Methodology

The methodology was a descriptive quantitative approach that sought to answer the Patient population, Intervention of interest, Comparison, Outcome(s), and Time (PICOT) question: How do NPs perceive sharing of clinical notes through a patient portal?23 The PICOT question format is a consistent format used to develop clinical research questions. Note, not every PICOT question requires the Time component.

The research study was approved by the Purdue University Global Institutional Review Board. Permission to share the survey with all clinical practice sites was obtained from the owner of the site or the dean of the school of nursing.

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Sample

The sample consisted of several groups: invited participants (NP faculty who worked for Purdue University Global and NPs who worked for an outpatient clinic in a large Midwestern state) and NPs who saw information about the study on social media such as Facebook, were members of an NP-focused LinkedIn group, or were members of Sigma Theta Tau International.

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Survey setting and instrument

The survey was made available via SurveyMonkey between February 1 and August 31, 2018. The survey started with a consent form that sent the potential participant to the survey if “Yes,” was selected, or to a thank-you page if “No,” was selected. The survey included 12 multiple-choice questions, one sentence-completion question, and one open-ended question allowing participants to share any other comments. The first five questions consisted of demographic information (licensing/certification status, practicing or not, specialization area, and education level), and the other seven questions addressed the PICOT. A total of 57 participants completed the survey. Percentages were evaluated for each of the multiple-choice questions. The responses to open-ended questions were examined for themes.

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Data analysis

Descriptive statistics were used to describe the sample's demographic data and responses to the survey questions. Because the study was designed to understand the NPs' perception of sharing clinical notes with their patients, the researchers felt this approach would allow for basic identification of concepts related to the NPs' changing practices. Open-ended questions were examined for commonalities and the responses were tagged, similar tags were noted and merged, and overarching similarities were presented.

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Results

Of the total 57 survey participants, 47 (82.5%) were actively practicing. The majority were FNPs (61.4%), MSN-prepared (70.2%), had practiced for 6 or more years (63.2%), and were both licensed and certified as NPs (77.2%). Seven participants were not practicing NPs, and three participant responses were missing. Of the practicing non-FNPs, five identified as gerontological adult NPs and five classified their practice as “other.” Nine stated they were either acute care, adult, gerontological, pediatric, or psychiatric/mental health NPs. (See Participant demographics.)

Approximately half of the survey respondents use patient portals and share their clinical notes. Overall, perceptions about sharing clinical notes were somewhat positive to very positive (40.3%). A total of 31.6% of the participants felt that their first experience with sharing their clinical notes was a somewhat positive to very positive experience. The biggest issue for many of the participants was knowing patients did or would be able to read their clinical notes. Because of this, the participants felt this would cause them to change how they wrote their notes. Nevertheless, just under 10% of participants noted there was or would be no effect on how they wrote their clinical notes. Lastly, more than 70% had apprehensions about patients not understanding the medical terminology used in their clinical notes. Despite these concerns, the participants were positive about sharing the notes.

When asked if the participants presently used a patient portal that allowed clinical notes sharing, 49.1% (n = 28) said they did not at the current time. These NPs were asked how knowing they might be sharing their clinical notes in the future could affect their first experience. The majority (90%, n = 9) felt it would be a somewhat positive to very positive experience. Of those who did use such a patient portal, 40.3% said it was a somewhat positive to very positive experience (n = 23). Only 5.3% felt that it was a somewhat negative experience, with none feeling that it was a very negative experience. The knowledge that they would be sharing their clinical notes did affect the way NPs would write their clinical notes (major affect: 12.3%, n = 7; moderate affect: 14%, n = 8). Only 8.8% (n = 5) said it would have no effect on how they wrote their clinical notes.

Table

Table

The participants who had shared their clinical notes through patient portals were asked how they rated their first experience: 19.3% (n = 11) rated their initial experience with sharing clinical notes as somewhat positive. Although 12.3% (n = 7) thought the experience was very positive, the same number thought it was somewhat a negative experience, and 1.8% (n = 1) thought it was a negative experience. Most of the NPs did have concerns about patients understanding medical terminology or other aspects of their clinical notes (70.2%, n = 40).

When asked about their feelings knowing clinical notes may be read by patients through the portal, 40 of the participants responded to the open-ended questions by expressing concerns such as: “NP and patient honesty in providing information,” and “NPs less likely to include details that may be helpful for future recall or may be misinterpreted by patients.” The open-ended questions validated the quantitative responses about patients not understanding what was written because of the use of medical terminology. The remaining respondents were positive in their responses and included statements such as: “comfortable allowing my patients [sic] read their clinical notes,” “an even greater need to make myself clear and well understood when speaking to them,” and “that it may improve the understanding of their care plan and improve self-management.” The participants also shared that they were “glad someone is asking this,” and “I personally like the idea of patient access to their medical information. It is the same when I myself am the patient when I like to have the same access.”

Two additional questions were asked about sharing computer screens with patients while in the clinical setting. A total of 35% (n = 20) stated they had shared their computer screen with their patients and 10.5% (n = 6) said they had not done so. Asked if they would be willing to do so, 70.2% (n = 40) said they would consider it. (See Survey results; Missing cells represent questions that do not apply to the NP's practice site [for example, some clinics did not have patient portals where NPs posted their clinical notes.])

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Discussion

This study supported previous research that found providers' perceptions of sharing clinical notes with their patients to be positive.2,6,9,13 In addition, the NPs felt their first experience with sharing the notes was a positive experience. The NPs felt sharing the notes would help improve patients' understanding of their care plans and self-management, an important aspect in improving shared decision-making and patient engagement.4 A similar sentiment was expressed by physicians in the literature.5,12,18 As with the physicians studied in the past, the participating NPs expressed concern about how patients would interpret the content of their clinical notes and that knowing their notes would be shared would impact what they wrote.9 NPs felt misunderstandings could negatively impact the therapeutic relationship. Consequently, they felt they had a greater need to make sure what they wrote was clear.

Further, the participating NPs expressed their concern about how well patients would understand medical terminology, an issue also found among physicians' perceptions of clinical notes sharing.11 Clinical notes that are written using less medical terminology may cause fewer misunderstandings. Providers could also try providing patients with a written or verbal explanation of the terminology they may encounter in the clinical notes during the patients' exams. The participants also had concerns about how honest NPs and patients were when providing information. This concern has not been addressed with other healthcare providers.

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Table

Table

Table

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Limitations

This study collected data from relatively small sample. Traditionally, this would be considered a pilot study in which a hypothesis would be tested. Pilot studies now focus more on acceptability and feasibility.24 Thus, the sample size of this study, designed as a descriptive quantitative approach to identify NP perceptions related to clinical notes sharing through a patient portal, was appropriate.

Another limitation of the sample was that the participants were recruited primarily from an academic setting (where NPs are also engaged in practice) and one free-standing clinical practice located in the Midwest. The number of respondents from social media recruitment may not be representative of the sample. It is also worth considering that not all NPs work in settings that have patient portals, which might have influenced their responses to relevant questions.

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Future research

Further research needs to include a larger, more diverse sample of NPs in different specialty outpatient clinics and hospitals. In addition, future research should examine the attributes found in past studies, such as improved adherence to medications and determining NPs' perceptions of sharing their clinical notes with patients. Finally, the patients' perceptions of shared clinical notes and their experiences with the healthcare provider should be studied to truly understand this new practice.

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Implications for practice

From this study, three major implications for advanced nursing practice emerged. First, participants expressed concerns about how to write clinical notes. NPs should be encouraged to assess the organizational climate related to the sharing of clinical notes in their workplace and discuss concerns regarding full and accurate documentation with administration. Because concerns emerged regarding the potential impact on patient interpretation of the clinical note, NPs should consider reviewing their clinical notes and terminology prior to ending the visit or using simpler language, particularly in cases where differential or presumptive diagnoses might be concerning to the patient. There may be a concern related to additional time spent writing the note so that patients can understand them clearly. Consequently, practices could consider the use of another individual to serve as a scribe.25 This would allow for face-to-face conversations without requiring the NP to focus quite as much on documentation, allowing them to instead explain the meaning of the medical terminology while the scribe makes the entries into the record. NPs would then review the clinical notes with the patients present to ensure accuracy in documentation as well as patient understanding.

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Conclusion

As access to clinical notes through patient portals becomes more mainstream, providers will need to consider how to engage patients in conversations about their health and medical conditions. NPs, like their physician and physician assistant colleagues, should examine any personal concerns they have related to perceptions of increased workload, patient anxiety about not understanding what is written, and how to write effective and detailed notes. Developing good communication practices during the visit and discussing the details of the patient note and answering questions in real time provides an opportunity to reduce concerns and anxiety for both parties.

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      Keywords:

      clinical notes; OpenNotes; patient engagement; patient portals; physicians; survey

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