Keywords
meaningful use - electronic health records and systems - pediatric health disparities
- health information technology - patient portal
Background and Significance
Background and Significance
Patient Portal Purpose
The patient portal (portal) is a secure online Web site that provides patients with
24-hour access to medical information and scheduling tools via the electronic health
record (EHR).[1]
[2]
[3]
[4] These tools have been supported by financial incentives provided by the Centers
for Medicaid and Medicare Services (CMS) via the Health Information Technology for
Economic and Clinical Health (HITECH) Act's Meaningful Use program and, as a result,
are generally available in large- and medium-sized hospitals in the United States.[5]
[6]
[7] The purpose of this access is to empower patients and promote health self-management
by providing patients with access to health information, appointment scheduling, bill
payment, and secure communication with their health providers outside of face-to-face
encounters.[8]
[9]
[10]
[11] The portal may improve patient functional status and reduce high-cost utilization.[12]
Portal Utilization Barriers
Patient portals continue to be underutilized.[1]
[2]
[5]
[8]
[9]
[13]
[14]
[15]
[16] Limited portal familiarity, lack of technological knowledge, low health literacy,
and minimal provider endorsement have been linked to low activation, while users are
more likely to have more education and more likely to be internet users.[9]
[13]
[14]
[17]
[18]
[19]
[20] Among adult users, personal characteristics such as race/ethnicity, age, gender,
education, primary language, and caregiving role influence portal activation; prior
studies show that patients of minority race/ethnicity and non–primary English speakers
were less likely to activate a portal account.[1]
[5]
[9]
[15]
[21]
[22]
[23] Additionally, despite added CMS meaningful use incentives to expand portal use,
race, and ethnicity have continued to be independent predictors of portal utilization.[16]
Even when the portal is optimized for a smart phone and accessible using an app, differences
in portal use by race and ethnicity remain.[24] Among adults, it is acknowledged that there are substantive differences in the way
portals are promoted among patients,[18] but systematic reviews and analysis of large datasets have focused on differences
associated with activation rates,[9]
[14]
[16]
[22] but have not evaluated demographic differences in who is offered an activation code,
and there is little information about portal recruitment or analysis to examine if
differences in portal activation are associated with who is offered an activation
code and if this differs by personal and health care delivery factors. Although Irizarry
et al reported pediatric caregivers have the most interest in portals, there are few
studies or systematic reviews examining pediatric portals.[9]
[22]
[25]
[26]
[27]
Objectives
This study examined patterns of patient portal codes and activation at two tertiary
academic pediatric hospitals, one in Colorado and the other in Southern California,
by race/ethnicity, preferred language, patient gender, and activation by caregiver
proxy or adolescent patient. One site had both English and Spanish portal information
and activation materials and the other provided English-only access. Given past findings
within adult patient samples, it was hypothesized that racial/ethnic minority patients,
patients with a primary language other than English, and adolescent patients will
have lower portal activation rates. Study findings will help researchers and providers
understand characteristics of portal activation, adoption, and use.
Methods
Setting
The settings were selected to maximize geographic and patient demographic diversity.
Site A is a tertiary pediatric hospital with affiliated satellite locations in Colorado.
It serves 812,000 children within a seven-state region in the western mountain and
plains, with ∼6,500 unique urology outpatient visits annually. Site A's patient racial/ethnic
composition is ∼82% white and 17% Hispanic/Latino. Site B is a tertiary pediatric
hospital and its affiliated network, which draws from three counties in Southern California,
serving more than 750,000 children, and has ∼5,100 unique urology outpatient visits
per year. Site B is located near an international border and its patients' racial/ethnic
composition is ∼45% Hispanic/Latino, 35% white, and 10% Asian. The Epic Electronic
Health Record (EHR) system (Verona, Wisconsin, United States), which incorporates
emergency department (ED), inpatient, outpatient (including satellite clinics), laboratory,
and radiology input into an integrated system, was used at both organizations. Site
A has used Epic since 2004 and began portal implementation in 2010. The EHR system
has been fully operational at Site B since 2010 with portal (MyChart) introduction
in late 2010. At the time of the study, portal functions included the ability to securely
message a physician's office, access normal test results, view a child's health summary
including immunizations, request prescription refills, request primary-care appointments,
and view all scheduled appointments. There were no customizations made to either site's
portal other than typical configuration settings at the time of this study.
Patient Portal Activation
Activation was a two-step process in which clinical staff offered an activation code
to caregivers of patients younger than 12 or patients 12 years and older during their
office visit allowing them to create a user name and password, verify personal information
such as date of birth, and set up security questions. The EHR configuration required
the initial registration take place on an internet-connected computer using an up-to-date
browser (such as Internet Explorer). Following activation, users could access the
portal through an iPhone or Android application, or by computer, with the ability
to use secure messaging, view normal test results, look at abbreviated health summaries
including problem lists, after visit summaries, and patient instructions; request
prescription refills; request primary care appointments; and view scheduled appointments.
Pediatric patients aged 12 to 17, with parental permission, could activate their own
accounts; in these cases, parents were allowed proxy access to limited information
such as their child's immunization list, but could not view the problem list, medications,
allergies, upcoming appointments, or released laboratory tests. The proxy mode allows
for protection of confidential communication between provider and patient about topics
such as family planning, sexually transmitted infections, and pregnancy.
Enrollment materials, portal log-in screen, and portal functions such as secure messaging
were available in English at Site A and in both English and Spanish at Site B. Interpretation
services were available for those needing assistance in other languages. There was
no standard approach to patient portal introduction at the time of the study; introduction
and discussion of portal adoption workflow varied by site. Site A held “Open Houses”
where providers and staff could see a portal demonstration and ask questions. Training
was conducted during departmental meetings, including nurses and medical assistants,
who introduced patients and their families to the potential utility of portal use
at the time that patients were roomed in the outpatient clinic; caregivers and patients
were allowed to use the exam room computer to activate their accounts. Volunteers
were also present at MyChart kiosks in the first half of 2011 to assist and encourage
people to activate their accounts. Site B provided training to the patient access
representatives who introduced the portal functions during patient check-in and provided
computers in both primary care and specialty practice waiting rooms to facilitate
same-day activation.
Patients
Patients were included if they had at least one outpatient urology visit from 2011
through 2016 and were aged 2 to 18 years at the time of visit. By including those
patients older than 2, most circumcision were excluded and diagnoses where a patient/caregiver
or adolescent patient were likely to look up laboratory results and wish to communicate
electronically with their providers were included. At both sites, the pediatric urology
division is the primary referral provider for an expansive geographic area and manages
care for children with chronic diseases, creating a large racially/ethnically diverse
and multilingual patient sample of more than 40,000 in which to examine portal activation
patterns.
Data Source
After obtaining Institutional Review Board approval, with a waiver of consent, activation
of the patient portal was retrospectively assessed from January 2011 to May 2016 for
all patients with at least one visit with an outpatient urology visit using activation
audit data. Demographic variables extracted included the patient's gender, preferred
language, race, and ethnicity. The patient's site was also captured. For those individuals
who activated an account, date of birth, and date of activation were used to assign
individuals to an age group. Among those who were not offered a code or did not activate
an account, those who were at least 11 years old at the start of the study period
were classified as adolescents. Those who were younger than 11 years during the time
period were classified as children. While age at first appointment was also considered,
using this calculation over-represented children who also had the opportunity to enroll
as teenagers.
Measures
For this analysis, “Offered” was defined as having an audit record of offering a patient
the opportunity to create a patient portal account, regardless of whether the offer
was accepted or declined. “Activated” was defined as having an active account or deactivated
account at the time of data extraction. Patients who received but did not activate
a code were classified as not activated.
Statistical Analysis
Summary statistics were calculated to describe the sample being studied. Associations
among categorical demographic variables, being offered a code, and activating portal
access were analyzed using Pearson's chi-square (χ
2). Those bivariate associations with a p-value of less than 0.05 were entered in a two-binary logistic regression model in
which all the independent variables were entered in a single, simultaneous block.
The first model examined the variable relationships with offer (offered/not offered)
and the second with activation (activated/not activated) status. Missing data were
coded as no response and included as a category in the analysis. Analyses were performed
using IBM SPSS Statistics for Windows, Version 25 (Armonk, New York, United States:
IBM Corp).
Results
Characteristics of Patients Offered a Code
Of 44,608 individuals seen in a participating urology department during the study
period, 21,815 or slightly fewer than half (48.9%) were offered a code for portal
activation ([Table 1]). Chi-squared analysis demonstrated significant differences (all p-values < 0.001) between offer status and the site, gender, race, ethnicity, and preferred
language ([Table 2]). Of those individuals who did not report race in the EHR, 26% were offered a code;
38% of those who reported Spanish as their preferred language were offered a code.
All the demographic variables were entered in a bivariate logistic regression. The
model had an omnibus χ
2 of 1,871.45 with a p-value of <0.001; a log-likelihood of 59,942.81 and Nagelkerke's R
2 of 0.06. All entered variables contributed significantly to the model ([Table 3]). The strongest association with offered code was site, with patients at Site B
almost twice as likely to be offered a code (odds ratio [OR]: 1.85; p < 0.001). Within the categories of race, individuals not having race recorded were
a third as likely to be offered a code (OR: 0.34; p < 0.001) compared with the reference group of white and those who were recorded as
other were only 80% as likely as whites (OR: 0.79 (p < 0.001). Those who reported their primary language as Spanish or a language neither
Spanish nor English were almost 40% less likely to have been offered a code to activate
the portal compared with those who reported English as preferred language.
Table 1
Offer and activation by site
|
Site A
|
Site B
|
Code not offered
|
14,404
|
55.9%
|
8,389
|
44.5%
|
Code offered
|
11,341
|
44.1%
|
10,473
|
55.5%
|
Activated
|
3,741
|
33.0%
|
4,864
|
46.4%
|
Deactivated
|
515
|
4.5%
|
2,223
|
21.2%
|
Code not activated
|
7,085
|
62.5%
|
3,386
|
32.3%
|
Total records
|
25,745
|
|
18,862
|
|
Table 2
Factors associated with offer and activation
|
Offered (n = 21,815 [48.9%])
|
Not offered (n = 22,793)
|
χ
2
|
p-Value
|
Activated (n = 11338 [52.0%])
|
Not activated
(n = 10476)
|
χ
2
|
p-Value
|
Frequency (%)
|
Frequency (%)
|
Frequency (%)
|
Frequency (%)
|
Site
|
Site A
|
1,1341 (52.0)
|
14,404 (63.2)
|
573.5
|
<0.001
|
4,255 (37.5)
|
7,086 (67.6)
|
1,977.9
|
<0.001
|
Site B
|
10,473 (48.0)
|
8,389 (36.8)
|
|
|
7,083 (62.5)
|
3,390 (32.4)
|
|
|
Sex
|
Female
|
7,560 (34.7)
|
6,779 (29.7)
|
123.3
|
<0.001
|
3,886 (34.3)
|
3,674 (35.1)
|
1.5
|
0.217
|
Male
|
14,254 (65.3)
|
16,012 (70.2)
|
|
|
7,452 (65.7)
|
6,802 (64.9)
|
|
|
Race
|
White
|
12,436 (57.0)
|
11,218 (49.2)
|
775.0
|
<0.001
|
6,483 (57.2)
|
5,953 (56.8)
|
117.3
|
<0.001
|
Asian
|
762 (3.5)
|
591 (2.6)
|
|
|
484 (4.3)
|
278 (2.7)
|
|
|
Black
|
1,028 (4.7)
|
1,020 (4.5)
|
|
|
473 (4.2)
|
555 (5.3)
|
|
|
Other
|
6,858 (31.4)
|
7,896 (34.6)
|
|
|
3,623 (32.0)
|
3,235 (30.9)
|
|
|
Not reported
|
731 (3.4)
|
2,068 (9.1)
|
|
|
275 (2.4)
|
455 (4.3)
|
|
|
Ethnicity
|
Hispanic
|
7,384 (33.8)
|
8,653 (38.0)
|
625.7
|
<0.001
|
7,306 (64.4)
|
6,351 (60.6)
|
83.4
|
<0.001
|
Non-Hispanic
|
13,657 (62.6)
|
12,248 (53.7)
|
|
|
3,743 (33.0)
|
3,641 (34.8)
|
|
|
Not Reported
|
773 (3.5)
|
1,892 (8.3)
|
|
|
289 (2.5)
|
484 (4.6)
|
|
|
Language
|
English
|
18,785 (86.1)
|
17,877 (78.4)
|
451.0
|
<0.001
|
9,835 (86.7)
|
8,950 (85.4)
|
25.4
|
<0.001
|
Spanish
|
2,628 (12.0)
|
4,205 (18.4)
|
|
|
1,265 (11.2)
|
1,363 (13.0)
|
|
|
Other
|
402 (1.8)
|
711 (3.1)
|
|
|
238 (2.1)
|
163 (1.6)
|
|
|
Table 3
Binary logistic regression
Offered
|
Activated
|
|
Odds ratio
|
p-Value
|
95% CI for EXP(B)
|
|
Odds ratio
|
p-Value
|
95% CI for EXP(B)
|
|
|
|
Lower
|
Upper
|
|
|
|
Lower
|
Upper
|
Site A
|
0.54
|
<0.001
|
0.52
|
0.56
|
Site A
|
0.26
|
<0.001
|
0.24
|
0.28
|
Female
|
1.27
|
<0.001
|
1.22
|
1.32
|
Female
|
1.06
|
0.03
|
1.01
|
1.14
|
Race[a]
|
|
<0.001
|
|
|
Race[a]
|
|
<0.001
|
|
|
Not reported
|
0.34
|
<0.001
|
0.30
|
0.38
|
Not reported
|
0.54
|
<0.001
|
0.43
|
0.67
|
Other
|
0.79
|
<0.001
|
0.75
|
0.83
|
Other
|
0.81
|
<0.001
|
0.75
|
0.87
|
Black
|
0.92
|
0.081
|
0.84
|
1.01
|
Black
|
0.73
|
0.081
|
0.63
|
0.83
|
Asian
|
1.06
|
0.301
|
0.95
|
1.19
|
Asian
|
1.04
|
0.301
|
0.95
|
1.19
|
Ethnicity[b]
|
|
<0.001
|
|
|
Ethnicity[b]
|
|
<0.001
|
|
|
Not reported
|
0.78
|
<0.001
|
0.70
|
0.88
|
Not reported
|
0.89
|
0.28
|
0.72
|
1.10
|
Hispanic
|
0.97
|
0.336
|
0.92
|
1.03
|
Hispanic
|
0.85
|
<0.001
|
0.79
|
0.92
|
Language[c]
|
|
<0.001
|
|
|
Language[c]
|
|
<0.001
|
|
|
Other
|
0.57
|
<0.001
|
0.50
|
0.65
|
Other
|
0.99
|
0.97
|
0.80
|
1.24
|
Spanish
|
0.61
|
<.001
|
0.57
|
0.65
|
Spanish
|
0.76
|
<0.001
|
0.69
|
0.84
|
Constant
|
1.63
|
<0.001
|
|
|
Constant
|
0.73
|
<0.001
|
|
|
a White as reference group.
b Non-Hispanic as reference group.
c English as reference group.
Age group data were available for 25,758 of the 44,608 sample (58%). Using age overrepresented
those who had been offered a code and underrepresented those for whom race and ethnicity
were not available. A separate analysis for those aged 2 to 11 and those 12 and older
was conducted. Within this subsample, race, ethnicity, gender, language, and site
were significant in both children and adolescents. Children who did not report race
or who reported race as other (χ
2 = 236.85; p < 0.0001), those who did not report an ethnicity (χ
2 = 322.58; p < 0.0001), those who reported Spanish as their primary language (χ
2 = 373.09; p < 0.0001), and male patients (χ
2 = 49.27; p < 0.0001) were significantly less likely to be offered a code. Site was also significant
(χ
2 = 643.17; p < 0.0001) as children at Site B were more likely to be offered a code. Among teens,
those who had not reported a race were significantly less likely to be offered a code
and those who identified as white were more likely to be offered a code (χ
2 = 163.03; p < 0.0001); those who did not report an ethnicity (χ
2 = 128.00; p < 0.0001); those who reported Spanish as their primary language (χ
2 = 71.68; p < 0.0001); and female patients were more likely to be offered a code (χ
2 = 40.31; p < 0.0001). Site was also significant (χ
2 = 7.64; p < 0.006) as teens at Site B were more likely to be offered a code. In children with
a parent/caregiver proxy, caregiver gender could not be assessed.
Characteristics of Patients Who Activated Portal Access
To explore characteristics associated with activation, the 11,338 activators (25.4%
of total eligible individuals) were compared with the 10,476 nonactivators ([Table 1]). Chi-squared analysis demonstrated highly significant differences (p < 0.001) between activation status and site, race, gender, and preferred language
([Table 2]). The bivariate logistic model had an omnibus χ
2 of 1,662.34 with a p-value of <0.001; a log-likelihood of 27,599.23 and Nagelkerke's R
2 of 0.10 ([Table 3]). All of the entered variables contributed significantly to the model. Site B had
the strongest association with activation (OR: 3.85; p < 0.001), with those at Site B almost four times as likely to activate their account.
Those who reported their preferred language as Spanish were only 76% as likely to
activate their account as those who reported English (OR: 0.76; p < 0.001). Those who did not report a race (OR: 0.54; p < 0.001), reported other (OR: 0.81; p < 0.001), or reported being black (OR: 0.73; p < 0.001) were less likely to activate the portal compared with whites. Of note, 14,754
individuals' (33%) race was captured as other or multiracial, indicating current available
measurement categories do not match patient self-identification. A separate analysis
of activation by age was conducted. Within those patients aged 2 to 11 years, being
white (χ
2 = 29.51; p < 0.0001), non-Hispanic (χ
2 = 9.18; p = 0.01), English as primary language (χ
2 = 55.26; p < 0.0001), and Site B (χ
2 = 353.83; p < 0.0001) were significantly associated with activation. Patient gender was not significant.
Similarly, in adolescents being white (χ
2 = 38.59; p < 0.0001), non-Hispanic (χ
2 = 14.07; p < 0.0009), female (χ
2 = 212.31; p < 0.0001), and Site B (χ
2 = 679.87; p < 0.0001) were significantly associated with activation. Primary language was not
significant among the teens.
Conclusion
Within this large, geographically and demographically diverse patient sample, pediatric
patients of minority race, ethnicity, and reported primary language other than English
were significantly less likely to be offered a code and to activate patient portal
access. These differences remained when looking specifically at children's accounts
activated by caregivers and those activated by adolescents. Although there are many
studies reporting user volume and demographics of patient portal users within adult
samples, few studies have evaluated demographic differences in who is offered a portal
access code.[1]
[23] This study expands existing adult literature on portal activation to the pediatric
population and addresses the current gap in the literature by evaluating disparities
in who is offered portal access.
The primary finding of this study was that fewer than 50% of patients seen in the
outpatient clinic setting were offered a portal code. Previous portal studies have
identified potential barriers to using portals, including computer access, primary
language other than English, and lack of information about the portal and its potential
utility, with these barriers heightened in health systems serving less advantaged
populations.[9]
[14]
[16]
[17] Notably, one pediatric study found being of Hispanic ethnicity decreased portal
activation by ∼25%.[28] This study demonstrates that, in addition to these previously described barriers
to utilization, demographic factors may impact the likelihood of patients being informed
and offered access to the patient portal, suggesting that underlying biases within
the health care system may disproportionately limit the ability of minority and non–English-speaking
patients and their caregivers to create a patient portal account, a necessary first
step for portal activation and utilization.
A second finding of this study was that, among those who did receive an access code
for the portal, less than half (45%) activated the portal. Portal activation was highly
associated with site of care, race, ethnicity, and preferred language. Language appeared
to be the most significant barrier to activation, with those reporting Spanish as
a preferred language one-third as likely to activate portal usage when controlling
for other demographic factors. Moreover, Arabic (n = 286), Somali (n = 141), Vietnamese (n = 97), and Chinese (n = 70) were also represented within this population and were only half as likely to
activate the portal compared with primary English speakers. Although portal information
and log-in interface were available in English and Spanish at one site, nearly all
available medical records and test results in the portal were presented in English,
suggesting decreased benefit of utilization among non–English-speaking populations.
These findings are in congruence with the adult literature, where the issue of language
as a barrier to portal use has been noted.[5]
[8]
[17]
[20] It is noteworthy that the site that provided bilingual portal information did have
higher offer and activation rates among those who were not primarily English speakers.
This study did not directly address the association of socioeconomic status with patient
portal utilization, but did find that demographic factors such as race, ethnicity,
gender, and location also impacted patient portal utilization. These findings suggest
that demographic factors beyond language may impact portal utilization. Prior studies
have shown that portal utilization may be impeded by limited health and electronic
literacy among those with lower income level and educational attainment, which has
been characterized as the “digital divide.”[23]
[29]
[30]
[31]
[32] Portal tasks require more health literacy and familiarity with technology than has
been asked of patients previously; yet, it is unclear that the health system is addressing
this gap in understanding.
Limited portal adoption and the associated disparate impact on minority and non–English-speaking
patients are concerning due to the underlying expectation that patients will utilize
electronic communication modalities such as the patient portal to manage their health
care. Patients are expected to schedule appointments, manage correspondence, request
prescription refills, obtain authorizations and referrals, and communicate with the
medical team using the portal.[11]
[33]
[34] The portal not only allows patients to track their health and increase their knowledge
but also to provide information and to raise questions and concerns with their providers
outside of the office setting. Such use creates a feedback loop allowing providers
to know how their patients are doing and to improve efficiency during clinic visits.[35] In the absence of effective portal utilization, providers and patients may be less
likely to gain the information they need, which may lead to health treatment delay
and potentially to an increased risk of poor health outcomes.
Both health systems in this study engaged in portal recruitment efforts by enlisting
existing clinic and administrative personal, such as those checking-in patients or
rooming patients for the appointments, to discuss enrollment for portal access. Clinicians
were encouraged to discuss the benefits of the portal with patients during clinic
visits. Additionally, clinical workflows were modified and computers installed in
waiting rooms and individuals at one site allowed to use computers in exam rooms to
allow more opportunities to sign up for the portal while needed activation details
were fresh in patient and caregivers' minds. Providing computers, which were necessary
for initial activation, suggests an implicit recognition that, while most patients
and caregivers have access to smartphones, many potential users may not have home
computer access.[19]
[21]
[30] This process also suggests informal recognition of potential electronic and health
literacy barriers to activation that may be ameliorated by access to clinical personnel
at the time of activation, despite the lack of formal instruction in the technological
skills needed to support effective portal use, which is similar to benefit of individually
based interventions found in adult studies.[26] Being part of an integrated health system with integrated primary and specialty
care likely raises the patient or proxy's view of portal activation utility.
This study highlights existing barriers to “meaningful use” initiatives such as the
patient portal across diverse patient populations. Although data on patient portal
use in pediatrics are limited, prior studies suggest that the HITECH-funded incentive
program for meaningful use of the EHR has been less impactful in the pediatric setting
and that meaningful use metrics may be seen as less relevant to pediatric care.[36]
[37] To achieve equal access and support a wide variety of patients, additional research
is needed to clarify current barriers to utilization of this technology. Additionally,
thoughtful dissemination and implementation strategies for health information technology
such as the patient portal should expand to address current gaps in health and technologic
knowledge, both through improved structured instruction within the health system,
as well as more innovative strategies for engagement through community organizations.
Finally, improved understanding of patient access to electronic resources such as
computers and smartphones may facilitate alternative methods such as blended online–offline
interventions to expand and to improve the quality of access.[38]
[39]
Limitations
This study leveraged existing EHR data collected from embedded data fields in a shared
EHR platform across diverse health systems to allow for more robust evaluation of
practice patterns related to patient portal dissemination and implementation. While
use of this methodology allowed for a more efficient data capture process compared
with traditional chart review, this process also led to several imitations. First,
data were limited by what was collected via the EHR. While we were able to obtain
general data regarding patient portal sign-up procedures, clinical workflows, and
portal marketing materials, we were unable to collect more specific data regarding
patient–staff or patient–clinician interactions related to portal education and activation,
data regarding how the caregiver or patient received an access code, or who actually
activated the account (patient, caregiver, or clinic personnel). Consequently, potential
differences in clinic site approach between the two sites could not be incorporated
in the multivariate model. Additionally, we do not know the impact of specialty versus
primary care recruitment or if there were interactions in portal interest and acuity
of condition and integration in the health system. Second, we utilized existing limited-use
data sharing agreements to facilitate multicenter data collection. Due to the limitations
of these agreements, although birth date was used for data extraction and age at activation
could be calculated, age could not easily be calculated for those patients who did
not activate portal access and ability to compare children with a parent proxy to
adolescents was limited. As a result, we were unable to assess the association of
patient age with likelihood of approach or portal activation within a large subset
of our sample. We also did not have proxies for sociodemographic status such as education,
insurance, or residential zip code.
Third, unlike the adult population, the majority of individuals activating the portal
in the pediatric setting are the parent caregivers of children under the age of 12.
Little is known about how this proxy relationship may change the perception of portal
usefulness or willingness to activate. While there were data about patient gender,
there was no information about the gender of parent/caregivers. Many of the users
may have been mothers, which would be congruent with more females being portal users;
however, this information was not readily available in this extracted dataset and
should be explored further. We were not able to track the temporal relationship of
activation potentially changing over time as the portal ceases to be a new and unknown
technology. Finally, patient health severity and health system utilization could not
be quantified to allow for assessment of the impact of patient disease state on portal
adoption. One hypothesis is that those individuals and families with more frequent
healthcare utilization might be more likely to utilize the portal due to the increased
benefit of accessing visit scheduling, health information, and provider communication
in one place; further studies are needed to understand the relationship of health
care utilization and disease severity with portal activation. Despite these limitations,
this study provides new and important information about differences in patient portal
code offers as well as potential demographic factors limiting portal activation in
the pediatric setting and provides insights to direct future investigations regarding
potential barriers to patient portal adoption.
Implications
EHR audit data of almost 45,000 individuals from two pediatric healthcare systems
in Colorado and California demonstrated fewer than 50% of those with an outpatient
appointment were offered a code to access the portal and fewer than 25% of all eligible
individuals activated portal access. As previously described in adults, pediatric
patients of minority race/ethnicity and who were primarily non-English speaking in
this study were less likely to be offered or to activate their access to the patient
portal.
Limited portal adoption is concerning because of growing institutional prioritization
of electronic patient engagement. Patients are increasingly expected to schedule appointments,
access health information, request prescription refills, obtain authorizations and
referrals, and communicate with the medical team using the portal. This study suggests
that current level of patient engagement with electronic technology such as the patient
portal is inadequate to meet these expectations.
Low offer rates may suggest implicit biases in the health system regarding which patients
would benefit from patient portal access. Furthermore, low activation rates may suggest
parents and patients do not understand the potential role of the portal in improving
the quality of their health care. Further understanding of technical and social barriers
to patient engagement and utilization of technology and the potential disparate effect
on minority and non–English-speaking patients is essential. Meeting the complexities
of these issues will require exploring translatable records, supporting health literacy,
increasing technological familiarity, and improving internet and mobile data access.
Additionally, engagement of patients and families to ensure that the portal meets
their needs and values is essential to optimize the potential utility of the patient
portal.
Clinical Relevance Statement
Clinical Relevance Statement
Meaningful use metrics such as electronic access to patient records have led to increased
expectations for patients and caregivers to utilize health technology to make appointments,
track laboratory results, and communicate with their providers outside of the clinic
visit. This study was able to compare a sample with English/Spanish portal recruitment
materials with one whose materials were English-only and suggests that the impact
of tools such as the patient portal on patient care is limited by lack of patient
adoption, with barriers to adoption disproportionately affecting racial/ethnic minorities
and non–English-speaking patients. As a result, efforts to address underlying limitations
in existing patient-oriented technologies, such as language limitations, health literacy,
and technologic access, are needed to optimize the potential impact of meaningful
use mandates on patient engagement and outcomes.
Multiple Choice Questions
Multiple Choice Questions
-
What is the most important focus of future studies regarding the moderate rate of
portal adoptions in pediatric patients?
-
Understand why interest is not uniform among all potential users.
-
Explore how individuals meaningfully utilize health information technology.
-
How patients utilize technology.
-
Focus on the providers' perspective of patient portal use.
Correct Answer: The correct answer is option b. Future studies that include patient and caregiver
health literacy, education level, socioeconomic status, household size, and family
structure are planned to augment current knowledge about barriers to patient portal
utilization and to transform patient portal utilization from a meaningful use requirement
into a meaningful experience for the patient and healthcare team.
-
Which statement is most accurate in describing portal activation in this study?
-
The majority of those given access code activated and used their account.
-
Gender was associated with both being approached and activating portal accounts.
-
Patient portal access was associated with clinical site.
-
Pediatric populations are different from adults in portal activation patterns.
Correct Answer: The correct answer is option c. As previously described in adults, pediatric patients
of minority race/ethnicity were less likely to be approached or to activate patient
portal access in this study. The majority of those given an access code did not activate
their account, which is similar to findings in adults. A difference by site was the
most statistically significant association. Further understanding of technical and
social barriers to patient engagement and utilization of technology is needed to optimize
the utility of the patient portal as a patient engagement.