UIC How Older Chronically Ill Patients View Open Visit Notes Paper

Journal of theAmerican Geriatrics Society
How do older patients with chronic conditions view
reading open visit notes?
Catherine M. DesRoches DrPH
| Liz Salmi AS | Zhiyong Dong MS |
Charlotte Blease PhD
Division of Primary Care, Department of
Medicine, Harvard Medical School, Beth
Israel Deaconess Medical Center, Boston,
Massachusetts, USA
Correspondence
Catherine M. DesRoches. Beth Israel
Deaconess Medical Center, 133 Brookline
Ave., 2nd Floor Annex, Boston, MA
02115, USA.
Email: cdesroch@bidmc.harvard.edu
Funding information
Cambia Health Foundation; Gordon and
Betty Moore Foundation; Keane Scholar
Award; Peterson Center on Healthcare;
Robert Wood Johnson Foundation
Abstract
Background: We examine the experiences with and perceptions of the effect
of reading clinical outpatient visit notes on patients with multiple chronic conditions at three healthcare organizations with significant experience sharing
clinical notes with patients.
Methods: A cross-sectional survey was conducted via patient portals at three
diverse healthcare organizations in the United States: Beth Israel Deaconess
Medical Center (Boston, MA), UW Medical Center (Seattle, WA), and
Geisinger Health System (Danville, PA). Participants were aged 65 and older
patient portal users who read at least one clinical note over the 12 months
before the survey. We examined the effect of note reading on patient engagement and managing medications.
Results: The majority of respondents had read two or more clinical notes
in the 12 months before the survey. Patients with more than two chronic
conditions were more likely than those with fewer or none to report that
reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their
medications. Very few patients reported feeling worried or confused about
their health or medications due to reading their notes.
Conclusions: Older patients with chronic conditions are particularly vulnerable
to misremembering and mismanaging their care and medication plans. Findings
from this study suggest that these patients and their care partners could receive
important benefits from accessing their notes. Healthcare organizations should
work to maximize patient’s engagement with their health information both
through the patient portal and through other methods to ensure that patients
and the healthcare systems reap the full benefit of the increased transparency of
medical records.
KEYWORDS
electronic health records, medication adherence, open notes, patient portal, survey
J Am Geriatr Soc. 2021;69:3497–3506.
wileyonlinelibrary.com/journal/jgs
© 2021 The American Geriatrics Society.
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15325415, 2021, 12, Downloaded from https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.17406 by University Of Illinois – Chicago, Wiley Online Library on [22/10/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
DOI: 10.1111/jgs.17406
DESROCHES ET AL.
INTRODUCTION
Key Points
An estimated 85% of older adults aged 65 and older in the
United States live with a chronic condition, and 60% have
more than one.1 Adults with chronic conditions use more
and spend more on healthcare services and often experience reduced physical and social functioning.2–4 Moreover, owing to a range of environmental, economic, and
social factors such as systemic racism, racial and ethnic
minorities, and low-income patients are at increased risk
of developing chronic conditions and doing so sooner
than white and higher-income populations.5 Managing
multiple chronic conditions and juggling their various
medications can be a time-consuming and frustrating
experience for older patients and their care partners.
Many chronic care management models emphasize the
need for open communication with informed, activated
patients and care partners to better manage chronic illness.6,7 However, for patients and their care partners to be
informed and activated, they need both information and
time. Clinic visits can be rushed and stressful experiences,
and research suggests that patients misremember, on average, approximately half of what was discussed during a
visit.8 These findings suggest that the clinic visit alone is
inadequate for information exchange and retention, and
supplemental, asynchronous clinician–patient communication and education methods are needed. Health researchers
have proposed that access to online patient portals may be
one way to increase engagement; however, until recently,
these portals have not offered patients access to the types of
information needed to engage in and manage their care.9
Beginning on April 5, 2021, U.S. healthcare organizations are legally required to provide patients with electronic
access to all information in their electronic health records,
including outpatient visit notes.10 The shift toward greater
information transparency for patients may help facilitate
patient engagement and communication in managing multiple chronic conditions by providing rapid, convenient
access to information. Patients who read their outpatient
visit notes (referred to in this article as “open notes”) report
feeling more in control of their care, better remembering
their care plan, and increased trust in their clinicians.11,12
Patients reading their notes say they better understand their
medications and potential side effects, and there is evidence
suggesting that note reading increases the likelihood that
patients will take their medications as prescribed.13,14
Several smaller studies have examined patients’ perceptions of open visit notes within a single chronic condition (e.g., diabetes, COPD) and found similar perceptions
of benefits and risks compared with patients without these
diagnoses.15–17 However, patients with multiple chronic
conditions may have different experiences. It is possible
that note reading may be overwhelming, lead to more
• Older people with chronic conditions report
reading their notes is very important for engaging in care, remembering care plans, taking
medications.
• Few older people were more worried or confused after reading notes.
Why Does this Paper Matter?
Sharing notes with patients is now federal regulation. Findings suggest important benefits for
older adults with chronic conditions.
confusion or worries for patients with more complex care
needs and more contact with the healthcare system.
We examined survey data from three healthcare organizations with up to 7 years of experience, offering
patients access to their notes through patient portals.
These healthcare organizations shared clinical notes
across all ambulatory care settings, with few exceptions
(e.g., mental health, pain management). Using the survey
data, we examined the experiences with and perceptions
of open notes among patients with multiple chronic conditions to understand the perceived benefits and risks of
this increased transparency.
METHODS
Survey
The details of survey development and field methodology
have been previously reported.11 In brief, the survey
instrument relied heavily on previously used questions,
with some new content developed with expert input,
patient focus groups, and psychometric testing.11,18 We
surveyed patients at three healthcare organizations: Beth
Israel Deaconess Medical Center (BIDMC) in Boston,
MA; Geisinger Health System, Danville, PA; and UW
Medical Center in Seattle, WA. All three sites provide
patients with access to their clinical notes through a
patient portal across all outpatient care settings with few
exceptions (e.g., mental health, pain management).
Patients must have a valid email address in order to register for a patient portal account. Patients aged 18 and
older with an active online portal account were eligible
for the survey if they had at least one open note available
15325415, 2021, 12, Downloaded from https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.17406 by University Of Illinois – Chicago, Wiley Online Library on [22/10/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
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to be read in the past year. We define an “open note” as
the clinical note written by a clinician after a clinical visit
conducted either in person or via telemedicine, which is
accessible to the patient through the organization’s
patient portal. Patients were sent a message with a personalized link to the online survey through the patient
portal inviting them to participate, and they received a
reminder 1 week after the original invitation if they had
not completed the survey. In addition, we offered respondents an incentive to encourage participation: a raffle of
50 prizes of U.S. $25 or U.S. $50 at each site.
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Four-level agreement responses were dichotomized as
agree/somewhat agree and disagree/somewhat disagree.
We used Chi-square tests to compare differences among
chronic condition categories across demographic characteristics. We tested associations between experiences and
perceptions of note reading and chronic condition categories using Chi-square tests for categorical variables and
ANOVA for continuous variables. Finally, we used
Fischer’s exact test for any analyses with an individual cell
size of less than 5. All analyses were conducted using SAS
software version 9.4 (SAS Institute, Inc).
The Institutional Review Boards approved our study
at all three healthcare organizations.
Analytic sample
To maximize the likelihood that we were examining responses about reading open notes, rather than other information on the patient portal (i.e., imaging reports), we
excluded from our analysis respondents whose self-reported
note reading in the past 12 months did not match portal
tracking data; for example, cases in which a respondent
reported reading at least one open note but the tracking
data showed they had not. Respondents were asked if they
were answering the survey for themselves or another person for whom they helped manage their care. We excluded
respondents answering the survey for another person
(n = 874). Finally, we excluded those under age 65, leaving
an analytic sample of true readers aged 65 and over. We
then linked respondents’ survey data with administrative
data containing diagnosis codes. We obtained all chronic
disease ICD-10 codes from the Centers for Medicare and
Medicaid Services (CMS) chronic condition algorithm
(CCW).19 We used the top 10 chronic conditions listed by
the National Council on Aging to create our chronic conditions flags: hypertension, high cholesterol, arthritis, ischemic heart disease, diabetes, chronic kidney disease, heart
failure, depression, Alzheimer’s disease and dementia, and
chronic obstructive pulmonary disease (COPD).20 Using the
diagnosis codes for each of these conditions, we identified a
patient as having a chronic condition if any of the diagnosis
codes for each visit met the criteria specified by the CCW.
We aggregated the visits of each patient, and then calculated the summed number of chronic conditions for each
patient. Finally, we classified the summed number of
chronic conditions as 0, 1–2, and more than 2.
RESULTS
Of 136,815 patients across the three healthcare organizations invited to complete the survey, 21.7% responded
(28,782 patients and 874 care partners). After excluding
patients younger than 65 and those answering the survey as care partners, our analytic sample consisted of
7688 respondents, of whom 4190 were female (Table 1)
and 4018 were between the age of 65 and 70. The majority of the respondents in our analysis were white (6526),
non-Latinx (6993), had at least a high school education
(7127), rated their health as at least good (6005), and
spoke English as a primary language (6973). Reflecting
the eligibility criteria of aged 65 and older, most respondents were retired (5465).
Men were more likely than women respondents to
have more than two chronic conditions (26.4% vs 34.7%;
p < 0.001), as were respondents with less than a high school education as compared with all other educational groups (47.2% high school, 35.5% some college, 29.0% college degree, 24.6% masters or doctoral degree; p < 0.001). In addition, although the majority of respondents were retired or not working for another reason (homemaker, unemployed, or unable to work due to a disability), those who reported being employed were significantly less likely to have two or more chronic conditions (retired 31.8% with >2 conditions, homemaker, unemployed, or
not working due to a disability 27.6%; employed 31.8%;
p = 0.003). Finally, respondents reporting their health as
fair or poor were more likely than those reporting better
health to have more than one chronic condition (45.7%
vs 27.0%; p < 0.001). Analysis Most items addressing potential benefits and risks asked for ratings on an 11-point scale ranging from 0 (not at all) to 10 (extremely). Responses to these items were collapsed into two categories (0–7) and 8–10 (“top box” scores). Experience with note reading The majority of respondents reported reading notes for a year or more (80.2%), and 52.9% reporting reading four or 15325415, 2021, 12, Downloaded from https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.17406 by University Of Illinois - Chicago, Wiley Online Library on [22/10/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License PATIENT PERCEIVED BENEFITS FROM READING VISIT NOTES DESROCHES ET AL. TABLE 1 Older patients (aged 65 and older) with chronic conditions by demographic group Variable Total (N = 7688) 0 chronic condition 1 or 2 chronic conditions >2 chronic
conditions
n (%)
n (%)
n (%)
p Value*