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Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches CM. Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness. JAMA Netw Open. 2021;4(3):e212823. doi:10.1001/jamanetworkopen.2021.2823
Starting April 5, 2021, new US federal rules will mandate that all clinicians (including physicians, physician assistants, and nurse practitioners) must share clinical notes with patients via online health portals with few exceptions.1 Surveys show that clinicians worry that patients with mental health diagnoses will become anxious, confused, or upset after reading their visit notes.2 In this study, we examined how patients with a mental illness diagnosis who read at least 1 clinical note in the last 12 months perceived how reading the note affected their adherence to prescribed medication.
We reanalyzed data from a web-based survey of patient experiences with access to their outpatient visit notes.3 Data were collected in 2017 from adult patients in 3 diverse health systems in the US, who had accessed at least 1 ambulatory note in the previous 12 months. All participants gave written informed consent. The institutional review boards at Beth Israel Deaconess Medical Center in Boston, Massachusetts, Geisinger Health System in Pennsylvania, and the University of Washington Medicine in Seattle approved the survey and study protocol at their respective sites. The American Association for Public Opinion Research (AAPOR) reporting guideline was used in this survey study.
Of the 136 815 patients who received a survey invitation, 29 656 responded for a response rate of 22% using the AAPOR guidelines.4 We excluded all participants who did not report taking or being prescribed medication in the 12 months before the survey. While there is no consensus or federal definition of serious mental illness (SMI) in the US, the term is often used to describe major depression, bipolar, and schizophrenia-related disorders.5 Using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10), we classified each respondent as having (1) SMI (major depressive disorder, schizophrenia, schizoaffective disorder, or bipolar-related disorder [ICD-10 codes F20.0-F29 and 31.0-F33.9]), (2) other mental illness (ICD-10 codes F00-F99, except for those listed earlier), or (3) no mental illness. We used a 2-sided t test, χ2 test, and Fisher exact test for statistical analyses, and significance was set at P < .001. All analyses were completed using SAS software version 9.4 (SAS Institute) and performed between August 2020 and January 2021.
In the sample of 29 656 respondents, 23 576 (79%) had read at least 1 note, and among them, 19 411 (82%) were taking or had been prescribed a medication in the past 12 months. Diagnostic codes were missing for 31 participants, leaving an analytic sample of 19 380; among the respondents 12 112 (62%) were women and 14 775 (76%) were aged 45 years or older. Of 18 943 patients with known race/ethnicity, 16 132 (85%) were White patients, 961 (5%) were Asian patients, 701 (4%) were Hispanic patients, and 496 (3%) were Black patients. Of the full sample of 19 380, 1371 (7%) had a diagnosis of SMI, and 1742 (9%) had another mental illness. Compared with patients without a mental health diagnosis, those with an SMI diagnosis and those with other mental health diagnoses were more likely to have been prescribed or take medications in the past 12 months (16 267 of 18 731 [87%] vs 1371 of 1415 [97%] vs 1742 of 1856 [94%], respectively; P < .001). Patients with SMI viewed their notes at a rate of 47% (95% CI, 46%-49%) compared with patients without a mental health diagnosis, who viewed notes at a rate of 62% (95% CI, 62%-63%) (P < .001) (Table 1). Among participants with an SMI diagnosis, 84 of 427 (20%) reported that reading their notes made them more likely to take their medications compared with 1317 of 9670 (14%) of patients with no mental health diagnosis (P < .001) (Table 2). Among patients with an SMI diagnosis, 898 of 1331 respondents (67%) reported that reading notes helped them understand why medications were prescribed; 882 of 1313 respondents (67%) felt more in control of their medications; 856 of 1319 respondents (65%) reported feeling more comfortable with their medications; and 789 of 1322 respondents (60%) reported that their notes helped answer their medication questions. Few respondents (23 of 1308 [2%] of those with SMI to 45 of 1653 [3%] of those with other mental health diagnosis) reported that reading their notes made them more confused; however, patients with an SMI diagnosis (61 of 1314 [5%]) and those with other mental health diagnoses (85 of 1646 [5%]) were more likely to report feeling more worried compared with patients without mental health diagnoses (524 of 15 233 [3%]; P < .001).
Among patients with SMI, access to clinicians’ notes may help clarify why medications have been prescribed and improve understanding of possible side effects. The findings of this study are promising in light of evidence that rates of psychotropic medication adherence for patients with major depressive disorders, bipolar disorders, and schizophrenia are only approximately 50%.6
This study has several limitations. The survey did not determine the kinds of medication on which participants based their responses. While the definition we used for SMI was supported by the literature and the Substance Abuse and Mental Health Administration, the results may vary based on the definition. Because the survey was reliant on self-report measures, it was unknown whether response biases affected the survey. While the response rate was moderate for an online survey, the demographic breakdown and sampling restriction to 3 US health systems were further limitations.
Sharing mental health notes will present challenges, and understandably, clinicians express concerns about patient access to their notes. However, access to clinical notes may benefit patients’ understanding and knowledge about their medications, including among persons with SMI.
Accepted for Publication: February 1, 2021.
Published: March 24, 2021. doi:10.1001/jamanetworkopen.2021.2823
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Blease C et al. JAMA Network Open.
Corresponding Author: Charlotte Blease, PhD, Division of General Medicine, Beth Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA 02215 (firstname.lastname@example.org).
Author Contributions: Dr Blease and Mr Dong had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Blease, Torous, Hägglund, DesRoches.
Acquisition, analysis, or interpretation of data: Blease, Dong, Walker, Hägglund, DesRoches.
Drafting of the manuscript: Blease, Torous.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Dong, Walker.
Obtained funding: DesRoches.
Administrative, technical, or material support: Torous, DesRoches.
Conflict of Interest Disclosures: Dr Torous reported receiving grants from Otsuka outside the submitted work. Dr Walker reported receiving grants from Gordon and Betty Moore Foundation and Cambia Health Foundation during the conduct of the study. Dr Hägglund reported receiving grants from Forte (the Swedish research council for health, working life, and welfare) and NordForsk for the research project NORDeHEALTH during the conduct of the study. No other disclosures were reported.
Funding/Support: This study was partially supported by the Cambia Health Foundation, Forte (Beyond Implementation), the Gordon and Betty Moore Foundation, and NordForsk (NORDeHEALTH).
Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: We thank the patients who responded to the survey.