OBJECTIVES:

Physicians increasingly share ambulatory visit notes with patients to meet new federal requirements, and evidence suggests patient experiences improve without overburdening physicians. Whether sharing inpatient notes with parents of hospitalized children yields similar outcomes is unknown. In this pilot study, we evaluated parent and physician perceptions of sharing notes with parents during hospitalization.

METHODS:

Parents of children aged <12 years admitted to a hospitalist service at a tertiary children’s hospital in April 2019 were offered real-time access to their child’s admission and daily progress notes on a bedside inpatient portal (MyChart Bedside). Upon discharge, ambulatory OpenNotes survey items assessed parent and physician (attendings and interns) perceptions of note sharing.

RESULTS:

In all, 25 parents and their children’s discharging attending and intern physicians participated. Parents agreed that the information in notes was useful and helped them remember their child’s care plan (100%), prepare for rounds (96%), and feel in control (91%). Although many physicians (34%) expressed concern that notes would confuse parents, no parent reported that notes were confusing. Some physicians perceived that they spent more time writing and/or editing notes (28%) or that their job was more difficult (15%). Satisfaction with sharing was highest among parents (100%), followed by attendings (81%) and interns (35%).

CONCLUSIONS:

Parents all valued having access to physicians’ notes during their child’s hospital stay; however, some physicians remained concerned about the potential negative consequences of sharing. Comparative effectiveness studies are needed to evaluate the effect of note sharing on outcomes for hospitalized children, families, and staff.

Participatory care, in which patients and caregivers are empowered with information and invited to engage in their health care,1  is deemed essential to ensuring high-quality care25  and patient safety.6,7  Innovations to improve information transparency, such as patient electronic health record portals,811  are rapidly expanding across health care organizations. Accelerated by positive findings from the OpenNotes literature,1214  physicians’ notes are now readily accessible to many outpatients through patient portals, and note sharing will soon be required across hospital systems in accordance with the 21st Century Cures Act.15 

Although the benefits of sharing physicians’ notes with adult patients have been well-described, whether similar benefits await parents when notes are shared during their child’s hospitalization remains unknown. Initial studies highlight the potential for notes to provide adult inpatients with the additional information and clarity necessary to make more informed decisions1619  and inspire positive health changes.1,1621  However, some physicians worry that these benefits may not translate to pediatrics given the added complexities of child-caregiver-physician dynamics, maintaining confidentiality, and the necessary protection of children.21  As hospitals gain the ability to share notes at the bedside,9  research is needed to understand the effects of sharing on parents and physicians.

Our objective was to evaluate parent and physician perceptions of sharing physicians’ notes with parents during their child’s hospitalization using a bedside inpatient portal. Findings from this pilot study will inform implementation efforts as hospitals work to comply with regulations mandating note sharing.15 

This study was conducted with physicians and parents of children admitted to a hospitalist service at a 111-bed Midwest tertiary children’s hospital from April to August 2019. On this service, pediatric interns write all admission and progress notes using standard note templates. Enrolled parents could view these notes on a bedside inpatient portal (MyChart Bedside; Epic Systems Corporation, Madison, WI) immediately after hospitalist attending editing and cosignature. The portal has been used at this hospital since 2014 and is provided to each family on a hospital-owned tablet (Apple iPad 32 GB; Apple Inc, Cupertino, CA) to use throughout their stay. The portal retained previously described functions22,23 ; however, note sharing was enabled for this study. No specific education was provided to physicians before sharing. Notes written by students, nurses, consultants, and other staff were not shared.

Purposeful sampling24  was used to recruit a diverse group of English-speaking parents or legal guardians of children aged <12 years with an anticipated length of stay of >24 hours. Parents of children aged ≥12 years were not included because of legal differences in access to confidential adolescent health information. Parents of children admitted with concerns of abuse or neglect were excluded. Eligibility was determined by chart review and confirmed with the attending. Physicians were eligible if they were the assigned intern or attending on the day of discharge. All physicians retained the ability to prevent any note from being shared. The institutional review board approved this study.

On admission, 1 parent from each child was invited to participate on the basis of family preference and anticipated availability after discharge. Researchers explained the risks and benefits of the study and obtained written informed consent. Note sharing was enabled, and parents were instructed on how to find notes once available. Parents were advised that 1 note would be available per day, typically by the late evening or following morning, and that questions could be addressed during morning rounds. Progress notes were not generally written on the day of discharge, nor were discharge summaries shared. There was no notification system in place to alert parents of note availability.

On enrollment, validated survey items were used to assess parent and child demographics, previous Internet and portal use, and health literacy.2527  After discharge, OpenNotes survey items previously employed in the adult ambulatory setting28  were used to evaluate parent perceptions of note sharing, including satisfaction with notes and whether notes were useful and helped them remember their child’s care plan, understand their child’s health, and feel more in control. An item developed for this study was used to assess whether notes improved parents’ ability to prepare for rounds.

The same items were used to assess intern and attending perspectives of note sharing. Additional OpenNotes items28  were used to assess physicians’ perceptions of the effect of sharing on their workload and job difficulty. Two items developed for this study were used to assess whether physicians perceived that sharing affected the length of rounds and number of questions parents asked outside of rounds. The physician survey also contained 3 open-ended questions regarding what they liked and disliked about note sharing and suggestions for improvement.

All enrolled parents who accessed ≥1 note and completed the discharge survey and their discharging interns and attendings were included in the analysis. Items were evaluated on a 5-point Likert scale, from “strongly disagree” to “strongly agree”; responses were tabulated, and χ2 testing was used to compare groups. Two researchers performed inductive content analysis29  of physician open-ended responses, independently coding text using an iteratively refined codebook. Discrepancies were resolved through consensus with a third researcher.

Of 32 eligible parents, 29 were enrolled and 25 were included in the analysis; 3 declined participation, 2 were discharged before note release, and 2 were unavailable to complete the discharge survey. Most parent participants were women (76%) and aged >30 years (72%) (Table 1). Parents had a wide range of race and/or ethnicity and education, income, and health literacy levels. Their children were hospitalized for a variety of reasons and had a median length of stay of 2 days (range, 1–18). Most parents (82%) reported reading notes >2 times daily. All physicians completed a discharge survey; none withheld a note from a parent.

Favorability toward note sharing varied among parents, attendings and interns (Fig 1). All parents were satisfied with access and perceived that the information was useful and helped them remember their child’s care plan. Most agreed that notes helped them prepare for rounds (96%), understand their child’s health (91%), and feel more in control (91%).

Attendings generally responded more favorably to the benefits of notes than interns. Attendings were more satisfied than interns with parental access (81% vs 35%, respectively; P < .01). Although some physicians worried that their notes would cause confusion (24% attendings and 45% interns; P = .12), no parents agreed that notes were more confusing than helpful.

Regarding physician workload, some reported spending more time writing, dictating, and/or editing notes (30% attendings and 27% interns). Fewer were less candid in documentation (15% attendings and 19% interns) or changed note content regarding cancer, mental health, substance abuse, obesity, or child neglect and/or abuse concerns (11% attendings and 15% interns). Two interns, but no attendings, perceived that rounds took longer; only 1 intern reported answering more parent questions outside of rounds. Most physicians (81% attendings and 80% interns) indicated that sharing did not make their jobs more difficult.

Table 2 outlines physician perceptions of the benefits and downsides of sharing and suggestions for improvement. In all, 28% of physicians reported little or no feedback from parents about notes.

This pilot study is the first to evaluate sharing notes with parents at the bedside. Despite differences in education, income, health literacy, and reason for admission, parents agreed that access to notes helped them remember their child’s care plan, prepare for rounds, and feel more in control. Although physicians (particularly interns) were skeptical or uncertain about the benefits of sharing, most did not report an increase in their workload. These findings have important implications for children’s hospitals as they work to comply with federal regulations requiring note sharing.15 

These results echo the benefits of note sharing revealed in studies with adult outpatients14,28,30,31  and inpatients.1619  Our findings also highlight the discrepancies between parent, attending, and intern perceptions. Open-ended responses from physicians suggest that many parents did not bring up feedback about notes, which may have made it difficult for physicians to recognize the effects of sharing. Physicians, particularly trainees, may also lack insight into the subjective experiences of patients14,32  and may benefit from feedback from parents on why notes are useful. Finally, some physicians felt the need to change their documentation for parent viewing, which may have impaired team communication and contributed to physician dissatisfaction. Future studies using experimental designs are needed to assess whether perceptions reflect true changes in outcomes.

Most physicians perceived little negative impact of sharing notes on their work. Although increased workload and impaired documentation quality weigh heavily on physicians’ minds,14,1618,28,33  these challenges have rarely materialized with ambulatory note sharing.20,28  Conversely, many physicians who shared notes with adult outpatients perceived a decrease in their workload because patients used notes to answer their own questions out of respect for their physicians’ time.1618,28  Future longitudinal studies assessing physician time and effort are needed to adequately determine if, and the degree to which, sharing affects inpatient physician workload.

This single-center, pilot study has limitations. It was conducted with a purposeful sample of available, English-speaking parents on a hospitalist service. Some parents had limited notes exposure; parents were surveyed at the end of the encounter when diagnostic uncertainty is typically resolved; and only discharging physicians were surveyed. Although we had high enrollment and response rates from participants of different backgrounds, findings may not be generalizable and may be subject to selection bias. We did not use validated measures to assess child medical complexity. We also did not assess the release of notes written by or the perceptions of other staff (eg, nurses and subspecialists), nor did we include adolescents, non–English-speaking parents, and parents of children admitted to other services. These are all important areas for future investigation.

Sharing physicians’ notes with parents may be a promising intervention to improve information transparency and engage parents as partners during their child’s hospitalization. Larger multicenter studies are needed to determine if results are replicable at other hospitals and in other populations.

We thank the parent and physician participants for their participation and valuable feedback.

Mr Zellmer performed data collection and analysis, assisted with data interpretation, and drafted and revised the manuscript; Ms Nacht assisted with the literature review, data interpretation, and critical manuscript revisions; Drs Coller, Hoonakker, Smith, Sklansky, and Dean and Ms Smith assisted with study design, data interpretation, and critical manuscript revisions; Ms Sprackling assisted with data collection and interpretation and critical manuscript revisions; Mr Ehlenfeldt assisted with study design, data interpretation, inpatient portal programming, and critical manuscript revisions; Dr Kelly conceived and designed the study, as well as supervised data collection, analysis, and interpretation, and revised the manuscript; and all authors approved the final manuscript as submitted.

FUNDING: Supported by the Agency for Healthcare Research and Quality grant K08HS027214, the National Institutes of Health Clinical and Translational Science Awards at the University of Wisconsin-Madison grant 1UL1TR002373, the University of Wisconsin-Madison School of Medicine and Public Health Wisconsin Partnership Program grant 3086, and the Herman and Gwendolyn Shapiro Foundation. Funders had no involvement in data collection, analysis, or interpretation or in the decision regarding manuscript submission. Funded by the National Institutes of Health (NIH).

1
Sarabu
C
,
Pageler
N
,
Bourgeois
F
.
OpenNotes: toward a participatory pediatric health system
.
Pediatrics
.
2018
;
142
(
4
):
e20180601
2
Little
P
,
Everitt
H
,
Williamson
I
, et al
.
Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations
.
BMJ
.
2001
;
323
(
7318
):
908
911
3
Maeng
DD
,
Graf
TR
,
Davis
DE
,
Tomcavage
J
,
Bloom
FJ
 Jr
.
Can a patient-centered medical home lead to better patient outcomes? The quality implications of Geisinger’s ProvenHealth Navigator
.
Am J Med Qual
.
2012
;
27
(
3
):
210
216
4
Stewart
M
,
Brown
JB
,
Donner
A
, et al
.
The impact of patient-centered care on outcomes
.
J Fam Pract
.
2000
;
49
(
9
):
796
804
5
Hibbard
JH
.
Patient activation and the use of information to support informed health decisions
.
Patient Educ Couns
.
2017
;
100
(
1
):
5
7
6
Committee on Hospital Care and Institute for Patient and Family-Centered Care
.
Patient- and family-centered care and the pediatrician’s role
.
Pediatrics
.
2012
;
129
(
2
):
394
404
7
Institute of Medicine (US) Committee on Quality of Health Care in America
.
Crossing the Quality Chasm: A New Health System for the 21st Century
.
Washington, DC
:
National Academies Press (US)
;
2001
8
Dendere
R
,
Slade
C
,
Burton-Jones
A
,
Sullivan
C
,
Staib
A
,
Janda
M
.
Patient portals facilitating engagement with inpatient electronic medical records: a systematic review
.
J Med Internet Res
.
2019
;
21
(
4
):
e12779
9
Kelly
MM
,
Coller
RJ
,
Hoonakker
PL
.
Inpatient portals for hospitalized patients and caregivers: a systematic review
.
J Hosp Med
.
2018
;
13
(
6
):
405
412
10
Kelly
MM
,
Hoonakker
PLT
,
Coller
RJ
.
Inpatients sign on: an opportunity to engage hospitalized patients and caregivers using inpatient portals
.
Med Care
.
2019
;
57
(
2
):
98
100
11
Kelly
MM
,
Thurber
AS
,
Coller
RJ
, et al
.
Parent perceptions of real-time access to their hospitalized child’s medical records using an inpatient portal: a qualitative study
.
Hosp Pediatr
.
2019
;
9
(
4
):
273
280
12
Ross
SE
,
Lin
CT
.
The effects of promoting patient access to medical records: a review
.
J Am Med Inform Assoc
.
2003
;
10
(
2
):
129
138
13
Delbanco
T
,
Walker
J
,
Darer
JD
, et al
.
Open notes: doctors and patients signing on
.
Ann Intern Med
.
2010
;
153
(
2
):
121
125
14
Walker
J
,
Leveille
S
,
Bell
S
, et al
.
OpenNotes after 7 Years: patient experiences with ongoing access to their clinicians’ outpatient visit notes
.
J Med Internet Res
.
2019
;
21
(
5
):
e13876
15
HealthIT
.
Information blocking
.
2020
. Available at: https://www.healthit.gov/topic/information-blocking. Accessed June 20, 2020
16
Prey
JE
,
Restaino
S
,
Vawdrey
DK
.
Providing hospital patients with access to their medical records
.
AMIA Annu Symp Proc
.
2014
;
2014
:
1884
1893
17
Grossman
LV
,
Creber
RM
,
Restaino
S
,
Vawdrey
DK
.
Sharing clinical notes with hospitalized patients via an acute care portal
.
AMIA Annu Symp Proc
.
2018
;
2017
:
800
809
18
Weinert
C
.
Giving doctors’ daily progress notes to hospitalized patients and families to improve patient experience
.
Am J Med Qual
.
2017
;
32
(
1
):
58
65
19
Breuch
L-AK
,
Bakke
A
,
Thomas-Pollei
K
,
Mackey
E
,
Weinert
C
.
Toward audience involvement: extending audience of written physician notes in a hospital setting
.
Writ Commun
.
2016
;
33
(
4
):
418
451
20
Bialostozky
M
,
Huang
JS
,
Kuelbs
CL
.
Are you in or are you out? Provider note sharing in pediatrics
.
Appl Clin Inform
.
2020
;
11
(
1
):
166
171
21
Bourgeois
FC
,
DesRoches
CM
,
Bell
SK
.
Ethical challenges raised by OpenNotes for pediatric and adolescent patients
.
Pediatrics
.
2018
;
141
(
6
):
e20172745
22
Kelly
MM
,
Dean
SM
,
Carayon
P
,
Wetterneck
TB
,
Hoonakker
PL
.
Healthcare team perceptions of a portal for parents of hospitalized children before and after implementation
.
Appl Clin Inform
.
2017
;
8
(
1
):
265
278
23
Kelly
MM
,
Hoonakker
PL
,
Dean
SM
.
Using an inpatient portal to engage families in pediatric hospital care
.
J Am Med Inform Assoc
.
2017
;
24
(
1
):
153
161
24
Duan
N
,
Bhaumik
DK
,
Palinkas
LA
,
Hoagwood
K
.
Optimal design and purposeful sampling: complementary methodologies for implementation research
.
Adm Policy Ment Health
.
2015
;
42
(
5
):
524
532
25
Chew
LD
,
Bradley
KA
,
Boyko
EJ
.
Brief questions to identify patients with inadequate health literacy
.
Fam Med
.
2004
;
36
(
8
):
588
594
26
Haun
J
,
Noland-Dodd
V
,
Varnes
J
,
Graham-Pole
J
,
Rienzo
B
,
Donaldson
P
.
Testing the BRIEF health literacy screening tool
.
Fed Pract
.
2009
;
26
(
12
):
24
31
27
Weiss
BD
,
Mays
MZ
,
Martz
W
, et al
.
Quick assessment of literacy in primary care: the newest vital sign
.
Ann Fam Med
.
2005
;
3
(
6
):
514
522
28
Delbanco
T
,
Walker
J
,
Bell
SK
, et al
.
Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead
.
Ann Intern Med
.
2012
;
157
(
7
):
461
470
29
Downe-Wamboldt
B
.
Content analysis: method, applications, and issues
.
Health Care Women Int
.
1992
;
13
(
3
):
313
321
30
Gerard
M
,
Chimowitz
H
,
Fossa
A
,
Bourgeois
F
,
Fernandez
L
,
Bell
SK
.
The importance of visit notes on patient portals for engaging less educated or nonwhite patients: survey study
.
J Med Internet Res
.
2018
;
20
(
5
):
e191
31
Nazi
KM
,
Turvey
CL
,
Klein
DM
,
Hogan
TP
,
Woods
SSVA
.
VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes
.
J Am Med Inform Assoc
.
2015
;
22
(
2
):
380
389
32
Dobscha
SK
,
Denneson
LM
,
Jacobson
LE
,
Williams
HB
,
Cromer
R
,
Woods
S
.
VA mental health clinician experiences and attitudes toward OpenNotes
.
Gen Hosp Psychiatry
.
2016
;
38
:
89
93
33
Feldman
HJ
,
Walker
J
,
Li
J
,
Delbanco
T
.
OpenNotes: hospitalists’ challenge and opportunity
.
J Hosp Med
.
2013
;
8
(
7
):
414
417

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.