ARTICLE
Integrated Personal Health Record Use: Association
With Parent-Reported Care Experiences
AUTHORS: Jeffrey O. Tom, MD, MS,a,b Rita Mangione-Smith,
MD, MPH,b,c,d Cam Solomon, PhD,d and David C. Grossman,
MD, MPHb,c,e
aKaiser Permanente Center for Health Research-Hawaii, Honolulu,
Hawaii; Departments of bPediatrics and cHealth Services,
University of Washington, Seattle, Washington; dCenter for Child
Health, Behavior, and Development, Seattle Children’s Research
Institute, Seattle, Washington; and eGroup Health Research
Institute, Seattle, Washington
KEY WORDS
personal health records, chronic disease, integrated health
system
ABBREVIATIONS
CAHPS—Consumer Assessment of Healthcare Providers and Systems
ICD-9—International Classification of Diseases, Ninth Revision
ICE—imputation by chained equations
PHR—personal health record
The contents of this publication are solely the responsibility of
the authors and do not necessarily represent the official views
of Group Health Cooperative and its Research Institute.
www.pediatrics.org/cgi/doi/10.1542/peds.2011-1786
doi:10.1542/peds.2011-1786
Accepted for publication Mar 2, 2012
Address correspondence to Jeffrey O. Tom, MD, MS, Kaiser
Permanente Center for Health Research, Hawaii, 501 Alakawa St,
Suite 201, Honolulu, HI 96817. E-mail: [email protected]
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2012 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: Dr Grossman is a shareholder in the
Group Health Permanente Medical Group, which contracts
exclusively to provide medical care for Group Health members;
and Drs Mangione-Smith, Solomon, and Tom have indicated they
have no financial relationships relevant to this article to
disclose.
FUNDING: Supported by Health Resources and Services
Administration grant T32HP10002-21 and an Academic Pediatrics
Association Young Investigator Award supported by the
Maternal and Child Health Bureau in partnership with the
American Academy of Pediatrics. This publication was
supported in part by funding provided by the Group Health
Cooperative Research Institute.
WHAT’S KNOWN ON THIS SUBJECT: Regular use of an integrated
personal health record (PHR) may lead to improved outcomes
through improved care coordination, communication, and patient
empowerment. A limited number of studies have examined
integrated PHR use for children.
WHAT THIS STUDY ADDS: Parents of children with chronic
disease appear willing to use an integrated PHR to address health
care needs for their child. PHRs may lead to improved health care
and outcomes by enabling more coordinated care for children
with chronic disease.
abstract
OBJECTIVE: To examine integrated personal health record (PHR) use
patterns among parents of children with chronic disease and compare ratings of care experiences between integrated PHR users and
nonusers.
METHODS: A survey was mailed to 600 randomly selected parents of
children with chronic disease #5 years old and enrolled at Group
Health for $1 year. Respondents reported integrated PHR use in the
past 12 months, types of services used, or reasons for nonuse. We
measured parent ratings of care experiences by using Consumer
Assessments of Healthcare Providers and Systems (CAHPS) composite
measures: Attention to Growth and Development, Attention to Safety
and Health, Getting Care Quickly, Getting Needed Care, Prescription
Medications, and Care Coordination. We used multivariate logistic
regression to test the association between integrated PHR use and
each CAHPS composite measure dichotomized by using the top box
score method.
RESULTS: Of 256 respondents (43% eligible response rate), 166 (65%)
were integrated PHR users and 90 (35%) were nonusers. The top integrated PHR services used were viewing immunization records, viewing
medical records, secured messaging, and scheduling appointments. The
top reasons for not using the integrated PHR were “too busy,” “forgot
login/password,” and “my child does not have health care needs.”
Adjusted logistic regression did not reveal any significant differences
between users and nonusers.
CONCLUSIONS: Parents of children with chronic disease appear willing
to use an integrated PHR to address health care needs for their child.
Integrated PHR use was not associated with higher scores on CAHPS
composite measures in this health plan. Pediatrics 2012;130:e183–e190
PEDIATRICS Volume 130, Number 1, July 2012
e183
Children with chronic disease with access to a medical home, compared with
those without one, are less likely to have
delayed care, unmet health care needs,
and missed school days.1 Strategies to
improve access to a medical home may
improve outcomes for these children.2
Health information technology, including electronic personal health records
(PHRs), may be a key component of
implementing a successful medical
home.3,4
Electronic PHRs can be differentiated by
whether the PHR is linked to (ie, “integrated”) or separate from (ie, “standalone”) the patient’s electronic medical
record. The American Medical Informatics Association recommends the integrated PHR (henceforth referred to as
“PHR”) because the PHR data are more
relevant to the patient, and data can be
restored easily in case of system failure.3 PHRs enable individuals to view
immunizations, laboratory results, aftervisit summaries, health plan benefits,
and current health conditions, and to
manage their medications or send secured messages to their health care
providers, as well. Providing parents of
children with chronic disease access
to these features may improve overall
care experiences by increasing a
parent’s understanding of their child’s
health care needs and providing timely
and convenient access to care. PHR use
may also improve care coordination
for children with chronic disease by
facilitating improved communication
between parents and all of their child’s
health care providers.5 To date, studies
of PHR use for children have been
limited to a single PHR developed in
cooperation with parents of children
with cystic fibrosis, juvenile idiopathic
arthritis, and diabetes mellitus.6–8
The objectives of this study were to
better understand how parents of children with chronic disease use PHRs and
to examine whether users, compared
with nonusers, report improved access
e184
TOM et al
to and experiences with the health
care teams.
METHODS
Study Population
This cross-sectional study was conducted at Group Health Cooperative, an
integrated health care system providing
care to 660 000 members in Washington.
Group Health’s PHR (MyGroupHealth)
was first made available to members in
2000 to improve patient-centered access to care.9 Members are continuously informed about MyGroupHealth
features through multiple channels, including their physician at the point of
care, the Group Health magazine, an
annual outreach reminder letter, and
other communications. Parents access
their child’s account as a proxy through
their own account. No additional fees
are required to access PHR services:
secured messaging, medical record
viewing (eg, immunizations, test results,
after-visit summaries, allergies, medical
conditions, health assessments, health
plan benefits), medication management,
or appointment management. Current
estimates indicate that 64% of adult
members access MyGroupHealth for
themselves, whereas 30% of parents
access MyGroupHealth for their child
(J. Ralston, MD, MPH, personal communication 2011).
Parents were potentially eligible if they
had a child with at least 1 outpatient
claim, who was ,5 years old, had at
least 1 chronic disease, and was continuously enrolled for at least 1 year
through December 31, 2009 (Fig 1). We
focused on children with chronic disease, because adults with chronic disease are more likely to use the PHR.10–12
We focused on children #5 years old,
because we assumed that parents of
young children would have a greater
need for a PHR secondary to increased
visit frequency with their child’s health
care providers during the first 5 years of
life. We used claims and administrative
data to identify potential subjects and
a validated list of International Classification of Diseases, Ninth Revision (ICD-9)
codes to define chronic disease states
for children.13 Children were included in
the eligible sample if they had 1 or more
outpatient claims with a listed ICD-9
chronic disease code. To reduce potential misclassification,14 children were
classified as having asthma if they had 2
or more claims for asthma (ICD-9 493.00–
FIGURE 1
Patient eligibility. a Passive refusers did not call to opt out of the study or return a blank survey. b Active
refusers called to opt out of study or returned a blank survey. c Ineligible patients were excluded from
response rate calculation. They were ineligible because they were members of the Group Health
Research Institute.
ARTICLE
493.99). From this eligible population, we
randomly selected 600 households for
the survey. If a household had .1 eligible
child, we randomly selected 1 of the
children for the study. We based our
sample size on the estimated proportion
of MyGroupHealth use by parents (30%),
the expected response rate (50%), and
our a priori determination of what might
indicate a clinically significant difference between users and nonusers for
each of our a priori outcomes (15 points
on a 0–100 scale).
Survey Design and Methodology
We designed a questionnaire based on
the recommended survey guidelines of
the Consumer Assessment of Healthcare Providers and Systems (CAHPS)
survey. Group Health Research Institute’s Survey Research Program was
responsible for all mailings, survey
collection, and data entry. A study identification was assigned to a child, and
this same study identification was placed
on his/her corresponding survey, which
enabled us to link survey responses by
a parent to the child’s administrative
data as well as determine which children required a nonresponder mailing.
Survey packets were addressed to the
“parent or guardian primarily responsible for the health care of” the
child and sent to the child’s home
address along with a 2-dollar bill. We
sent 2 additional survey packets to nonresponders. There was no telephone
outreach to nonresponders.
PHR Use Patterns
The PHR use pattern questions were
informed by previous surveys developed
and used at Group Health. A PHR “user”
was defined as any respondent who
answered “Yes” to the following question, “In the last 12 months, have you
used one of MyGroupHealth services for
your child?” whereas a “nonuser” was
defined as a respondent who answered
“No.” Both users and nonusers were
PEDIATRICS Volume 130, Number 1, July 2012
asked if any health care provider
encouraged PHR use for their child, if
the respondent used the PHR for his/
herself, and if the respondent had ever
signed up their child for the PHR regardless of use in the past 12 months.
To further evaluate use patterns, we
askedusers about frequency of use(1,2–
5, 6–9, $10 times in the past 12 months)
and the number of times (0, 1–2, $3
times) each specific PHR service (eg,
viewing immunization record) was used
for the child during the past 12 months.
To evaluate barriers to using the PHR,
we asked nonusers to select 1 or more
reasons from a predefined list (eg, too
busy), including an option to write in
other reason(s).
Primary Care Experiences
We measured access to and experiences with the health care services
provided to these children by using
CAHPS composite measures for members enrolled in commercial plans. We
used CAHPS composite measures from
the Health Plan version 4.0 (“Getting
Needed Care,” “Getting Care Quickly,”
“Parents’ Experiences with Prescription
Medicines,” and “Parents’ Experiences
with Coordination of their Child’s Care”)
and Clinician and Group version 2.0 (b)
(“Doctor’s Attention to Your Child’s
Growth and Development,” and “Doctor’s
Advice on Keeping Your Child Safe and
Healthy”).15,16 These CAHPS measures
address domains most applicable to
children with chronic disease because
these children have increased needs,
are often on medications, are cared
for by multiple health care providers,
and may have gaps in preventive care
because of the focus on chronic disease management during visits.
We dichotomized each of the 6 composite measures by using the CAHPS
composite “top box score” method at
the respondent level.17 With the use of
this method, the top box score equaled
“1” if the respondent answered all
questions within a composite measure
in the highest category (eg, “Always” or
“Yes”) and “0” otherwise. If no question
(s) within a particular composite measure were relevant to the respondent
(ie, a parent did not need to refill medications in the past 12 months), a score
was not calculated for that composite
measure.
Covariates
We used CAHPS standard case-mix adjustment questions to collect child characteristics (overall health status, age,
gender, race/ethnicity) and respondent
characteristics (gender, highest level of
education) from our survey.10–12 We
used a standard algorithm to categorize
children with multiple races.18 Child’s
insurance type (Medicaid or commercial)
and enrollment duration at Group Health
were based on administrative data.
Statistical Analysis
We conducted bivariate analyses to
analyze relationships between PHR use
and child/respondent characteristics
as well as each of the dichotomized
CAHPS composite measures by using x2
test of independence for categorical
variables and the Student t test for
continuous variables. We used multiple
logistic regression to evaluate the association between PHR use (user versus
nonuser) and our dichotomized CAHPS
top box scores: “Getting Needed Care,”
“Getting Care Quickly,” “Prescription
Medicines,” “Coordination of Care,”
“Growth and Development,” and “Safety
and Health.” We adjusted for key demographic covariates (respondent’s
age and education, child’s overall health
status) as well as child’s race/ethnicity
and type of insurance (commercial versus Medicaid).10–12,16 We used multiple
imputation by chained equations (ICE) to
mitigate the impact of missing values in
some of the covariates.19 ICE uses observed data and sequential regression
modeling to generate plausible values
e185
for missing data. We chose ICE over the
joint distribution method because the
covariates with missing values are of
mixed types (binary, categorical, and
continuous) making it challenging to
specify a joint distribution for them.
Twenty surveys required imputation for
missing covariates (11 users, 9 nonusers). To evaluate potential response
bias, we evaluated differences in aggregate child characteristics between
survey respondents and those who
chose not to return a completed survey
(ie, “passive refusers”). As a sensitivity
analysis, we conducted an unadjusted
bivariate analysis to evaluate the frequency of PHR use (0, 1, 2–5, 6–9, $10
times) in relation to our dichotomized
outcome (data not shown; no statistically significant relationships identified). We originally planned to linearly
transform each composite measure to
a score from 0 to 100 similar to a previous study.20 However, because of the
nonnormality of all but 1 of our linearly
transformed outcomes (median score
of 100), we chose instead to use the
CAHPS top box score method with logistic regression.
We analyzed the data with STATA10 and
set the statistical significance by using
2-tailed tests at the P , .05 level. This
study was approved by institutional
review boards at Group Health and
Seattle Children’s Research Institute.
RESULTS
Of the 7666 eligible children, 1154 (15%)
children had at least 1 chronic disease
(Fig 1). Of the 600 mailed surveys, we
received 256 completed surveys, which
resulted in a 43% eligible response
rate (7 active refusers, 36 missing
addresses, 3 ineligible). Child characteristics of nonresponders were
similar to those of responders, with
the exception that children of nonresponders were more likely female (57%
vs 43%, P , .001) and on Medicaid (21%
vs 11%, P , .001).
e186
TOM et al
Sixty-five percent of respondents (n =
166) reported use of the PHR in the past
12 months for their child. Users (versus nonusers) were more likely to have
commercial insurance for their child
(97% vs 73%, P , .001) and have at least
a 4-year college degree (74% vs 50%,
P , .001; Table 1). Our population’s top
chronic diseases were asthma (24%),
congenital musculoskeletal abnormalities (20%), congenital heart disease
(18%), inborn errors of metabolism
(9%), cystic fibrosis (7%), and hereditary and acquired hemolytic anemias
(5%).
The most highly used PHR services were
viewing the child’s immunizations, viewing the medical record (nonimmunizations), and secured messaging (Table 2).
Nearly 32% of respondents used the PHR
6 times or more in the past 12 months;
90% of respondents used the PHR at
least twice. Among nonusers, the top
reasons for not using the PHR were “too
busy,” “forgot login name and/or
password,” and “child does not have
health care needs” (Table 3). Only a
small number did not have internet access (n = 6) or a computer (n = 4). Approximately 25% (n = 22) of nonusers
reported signing up for PHR access for
their child at some point since becoming
a health plan member. Nearly 50% (n =
43) of nonusers indicated use of the PHR
for themselves (vs 97% among users).
The proportion of users versus nonusers
who answered all questions within a
composite measure in the highest category were as follows: “Getting Needed
Care” (48% vs 56%, P . .20), “Getting
Care Quickly” (52% vs 52%, P . .20),
“Experiences with Prescription Medications” (68% vs 65%, P . .20), “Care
Coordination” (62% vs 70%, P . .20),
TABLE 1 Child and Respondent Characteristics
All N = 256
Used PHR in Past 12 mo
Yes n = 166
Child’s characteristics
Overall health status
Excellent
Very good
# Good
Age, y, mean (SD)
Gender, female
Ethnicity
Hispanic
Non-Hispanic
Raceb
White
Black
Asian/Pacific Islander
Other
Enrollment, mo, mean (SD)
Insurance type
Commercial
Medicaid
Respondent characteristics
Age, y, mean (SD)
Gender, female
Education
.Bachelors
Bachelors
Some college
# High school
Pa
No n = 90
48
39
13
3 (1)
43
48
40
11
3 (1)
40
48
36
16
3 (1)
48
.55
5
94
5
94
6
94
.78
70
5
13
13
34 (12)
68
2
12
13
34 (12)
63
10
13
13
35 (12)
.03
89
11
97
3
73
27
36 (6)
87
36 (6)
90
35 (6)
82
35
30
24
10
42
32
20
5
22
28
32
18
.11
.23
.71
,.001
.37
.08
,.001
Values are given as percentages unless otherwise indicated. Percentages may not add up to 100% because of rounding or
missing values (20 surveys had a missing covariate [11 users, 9 nonusers]).
a Comparing PHR users versus nonusers.
b Respondents could choose .1 race for the child.
ARTICLE
TABLE 2 PHR Services Used in the Past 12 mo for the Childa
Percentage of PHR Users Accessing Each Serviceb
View immunizations
View medical record (nonimmunizations)
Secured messaging
Schedule appointment
View laboratory results/radiographs
Refill/view medications
View health coverage and benefits
Choose a doctor
$1 Times
$3 Times
80
76
72
55
50
30
13
5
11
19
28
14
10
8
1
0.6
Values are given as percentages.
a A PHR user can check .1 service.
b A respondent can indicate not using a particular PHR service (frequency not shown).
TABLE 3 Reasons for Not Using the PHR in
the Past 12 mo for the Childa
Too busy
Forgot login name and/or password
Child does not have health care needs
Too difficult to get online access for
MyGroupHealth
I don’t know about it
Prefer other routes of care (eg,
face to face)b
I don’t have access to the Internet
No high-speed Internet
I don’t have a computer
Too difficult to use
No response from systemb
Not comfortable sharing medical
information on the Internet
Not sure how to use the Internetb
It is a waste of time
a
n
%
30
22
20
10
25
18
16
8
8
7
7
6
6
6
4
3
3
1
5
5
3
2
2
1
1
1
1
1
A PHR nonuser can indicate .1 reason.
b These reasons were based entirely on write-in responses.
“Attention to Safety and Health” (48%
vs 45%, P . .20), and “Attention to
Growth and Development” (61% vs
53%, P . .20). After adjusting for child
characteristics (overall health status,
type of insurance, and race/ethnicity)
and respondent characteristics (age
and education) by using multivariate
logistic regression, we did not find
differences between users and nonusers on the dichotomized CAHPS top
box scores (Table 4).
DISCUSSION
In this study, parents were willing to use
a PHR as an adjunct method to address
their child’s health care needs through
PEDIATRICS Volume 130, Number 1, July 2012
viewing their child’s immunizations,
viewing their child’s medical record
other than immunizations (eg, aftervisit summaries), and sending secured
messages. However, PHR use was not
associated with higher CAHPS composite scores. This study is one of the first to
examine how PHR use might improve
care for this vulnerable population of
children.
Regular use of a PHR may potentially lead
to decreased health care utilization and/
or improved disease control through
improved care coordination, communication, access to care, and patient empowerment.21–23 The results of studies
evaluating health care utilization in adults
have been mixed and have revealed increased emergency department visits
among users,24 but inconsistent results
for telephone calls,24–26 office visits,11,25–28
and hospitalizations.24,28 Results have been
more consistent for the association of PHR
use and chronic disease control. Use of
secured messaging by adults managing
their own chronic disease has been associated with improved glycemic control
among patients with diabetes, improved
blood pressure control among patients
with hypertension, and decreased
depressive symptoms and improved
medication adherence among patients
with depression.21–23,29 Few studies
have evaluated PHR use for children.
The studies evaluating PHR use for
children with cystic fibrosis, diabetes,
or arthritis identified convenience and
empowerment as one of the key benefits of a PHR.6–8 This finding suggests
that PHR use may lead to more positive
care experiences for parents of children with chronic disease, although no
studies have examined PHR use with
respect to patient-reported care experiences. Our assessment of care experiences with the use of the CAHPS
composite measures did not support
this hypothesized association. This may
be explained by ongoing initiatives to
improve access to services and patientcentered care (eg, the “medical home
experiment”30) within this integrated
health care delivery system. We also
observed a “ceiling effect” for 5 of the 6
CAHPS composite measures assessed
that may have minimized our ability to
detect a difference between PHR users
and nonusers.
Among parents not currently using the
PHR for their child, being too busy to
incorporate PHR use into their regular
health care routines for their child was
the most frequently mentioned barrier.
With an increasing use of smart phones,
1 solution to help these families is the
creation of a mobile platform for the
PHR. We also found that 16% of parents
did not use the PHR because their child
did not have health care needs. One
explanation is that their child may have
stable disease and required minimal
active care management. Alternatively,
the PHR may not offer services parents
actually need or would find valuable,
such as downloadable signed medical
forms or letters. Although one of the top
barriers to use cited in previous studies
was privacy and security concerns,31–33
only 1 parent in our study felt uncomfortable sharing information over the
Internet. Consumers may feel more
comfortable with a PHR offered through
their health plan than from third-party
companies.33 Finally, simplifying access
issues, such as retrieving forgotten
login information, may also increase
e187
TABLE 4 Adjusted Association Between PHR Use and CAHPS Top Box Scores
Odds Ratio (95% Confidence Interval)
Used PHR in past 12 mo
Yes
No
Child characteristics
Overall health
Excellent
Very good
# Good
Insurance
Commercial
Medicaid
Race/ethnicity
White
Black
Asian/Pacific Islander
Hispanic
Other
Respondent characteristics
Age, y
Education
. Bachelors
Bachelors
Some college
# High school
Getting Needed
Care, N = 255
Getting Care
Quickly, N = 238
Prescription
Medications, N = 155
Coordination of
Care, N = 107
Safety & Health,
N = 249
0.6 (0.3–1.2)
Reference
1.1 (0.6–2)
Reference
Reference
0.5 (0.3–0.9)*
0.2 (0.1–0.6)**
1 (0.4–2.3)
Reference
0.8 (0.2–2.4)
Reference
1.2 (0.7–2.2)
Reference
1.3 (0.7–2.5)
Reference
Reference
0.4 (0.2–0.8)**
0.2 (0.1–0.5)***
Reference
0.4 (0.2–1)*
0.3 (0.1–0.8)*
Reference
1.4 (0.5–3.9)
1 (0.3–3.5)
Reference
0.7 (0.4–1.2)
0.4 (0.2–1)
Reference
0.6 (0.3–1)
0.2 (0.1–0.5)**
Reference
2 (0.7–5.6)
Reference
0.5 (0.1–2)
Reference
0.2 (0.03–1.2)
Reference
1.6 (0.6–4.2)
Reference
0.6 (0.2–1.6)
Reference
0.6 (0.1–2.1)
0.4 (0.1–0.8)*
1.8 (0.5–6.5)
0.6 (0.3–1.4)
Reference
0.7 (0.2–2.6)
0.6 (0.3–1.6)
1.3 (0.4–4.2)
1.9 (0.8–4.6)
Reference
2.8 (0.4–21)
1.4 (0.5–4.3)
1.2 (0.3–5.3)
0.6 (0.2–2.2)
Reference
—a
0.5 (0.1–2)
—a
1.5 (0.4–5.3)
Reference
0.5 (0.1–2.1)
0.9 (0.4–2.2)
0.3 (0.1–1.3)
1.7 (0.8–3.9)
Reference
0.6 (0.1–2.1)
0.7 (0.3–1.8)
0.4 (0.1–1.2)
1.2 (0.5–2.8)
1 (1–1.1)
1 (0.9–1)
1 (1–1.1)
1 (1–1.1)
1 (0.9–1)
Reference
1.4 (0.7–2.8)
1.7 (0.8–3.6)
2.6 (0.9–7.5)
Reference
1.6 (0.8–3.1)
1.3 (0.6–2.8)
1.3 (0.4–3.8)
Reference
1.1 (0.4–2.8)
1 (0.3–2.7)
0.8 (0.2–3.6)
Reference
0.4 (0.2–0.8)*
1.1 (0.5–2.3)
0.9 (0.3–2.4)
Reference
0.8 (0.4–1.6)
1.3 (0.6–2.9)
2 (0.7–6)
Reference
0.6 (0.2–1.5)
0.9 (0.8–1)
Reference
2.2 (0.7–6.7)
1.8 (0.5–7.2)
—a
Growth & Development,
N = 248
*P , .05, **P , .01, ***P , .001.
a Race/ethnicity categories of “Black” and “Hispanic” and parent’s highest level of education of “# high school” were omitted by the regression model because there were no observations for
users and/or nonusers.
PHR use. Consistent with studies focusing on adults with chronic disease,
PHR use by parents of children with
chronic disease was high.10 We also found
similarities in the most frequently used
PHR services and user demographics
(high education, commercial insurance)
in comparison with studies of adults
using a PHR for themselves or for their
child.22,31,34,35
This study has several limitations. We
evaluated only a single health system’s
PHR. However, the services offered are
similar to other large health systems
with a PHR.36–38 The cross-sectional nature of this study did not allow us to
examine our outcomes of interest both
before and after parents started using
the PHR. A prospective study that examines outcomes over time is needed to
better understand whether an association between PHR use and improved
care experiences exists. Because only
43% of eligible parents completed the
e188
TOM et al
survey, our findings may be subject to
response bias with an artificially high
proportion of parents being PHR users
in comparison with the source population. Future studies should attempt
to understand PHR use among a larger
Medicaid population, because these
children are more vulnerable and
their parents may have different use
patterns and needs.31 The frequency of
use and services used for the PHR
were based on self-report and thus
were subject to possible recall bias.
Despite these limitations, we found that
most parents of young children with
chronic disease were willing to use a PHR
to help address health care needs for
their child. Our rate of PHR use was
higher than other health plans with
well-established PHRs (12%–43%),
which was expected based on previous literature indicating higher rates
among those with chronic disease.39–41
Although PHR use was not associated
with the quality-of-care experiences
as measured by the CAHPS composites
in this study, future research should
prospectively evaluate other measures of access, care coordination, and
utilization and receipt of preventive
services to better understand the potential benefits of this technology.
Patients outside of integrated health
care delivery systems may eventually
have access to a PHR as medical
practices are encouraged to adopt
electronic medical records. Because
PHRs have been identified as the only
health information technology solution
covering all aspects of a patientcentered medical home,4 policy makers may want to facilitate PHR adoption
at the time of electronic medical record
implementation.
ACKNOWLEDGMENTS
The authors thank Dr James M. Perrin
(MassGeneral Hospital for Children
ARTICLE
CenterforChildandAdolescentHealthPolicy) for use of the Center’s chronic disease
list, the programming staff at Group
Health Research Institute for extracting the data, Dr James Ralston for providing feedback on our questionnaire
and reviewing our manuscript, and
Dr Chuan Zhou for his statistical
consultation.
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