Keywords
information sharing - open access to information - electronic health records and systems
- communication - patient-provider - encounter notes - patient portal
Background and Significance
Background and Significance
OpenNotes is an international movement dedicated to making health care more transparent
by encouraging health care professionals to share clinical notes with patients (www.opennotes.org). In 2010, The Robert Wood Johnson foundation led an initiative for the first OpenNotes
implementation and shared primary care provider (PCP) notes with over 20,000 adult
patients. While providers expressed concerns that provider note sharing would impact
workload and relationships with patients,[1] their findings demonstrated that provider note sharing did not have a significant
impact on physician workload as measured by whether there were observed increases
in messages or emails received from patients.[2] This and work from others have shown that patients and family members obtain significant
satisfaction and improvement in care when they are able to review their medical notes.[2]
[3]
Sharing of medical notes includes the processes of note sharing, that is, the sharing
of notes by providers to patients, and note reading by patients as well as outcomes
and consequences related to these respective processes. If notes are not shared, patients
cannot read them, and if patients do not read notes, the notes cannot provide benefits
to the patient. For the purposes of this discussion, we focus on the process of provider
note sharing. The original OpenNotes study recruited primary care adult physicians
to voluntarily participate in provider note sharing.[2] Application of provider note sharing at the organizational level provides an opportunity
to offer other options outside of volunteer note sharing (opt-in) including whether
to share notes by default, to allow providers to opt-out entirely, or to allow providers
to select which notes to share. Provider note sharing rates based on these different
approaches have not been detailed in the literature. Additionally, differences in
provider note sharing rates among non-PCPs and between specialties have not been studied.
Much of the research on provider note sharing to date has centered on adult patient
populations.[4] While OpenNotes lists over 130 pediatric health systems actively sharing notes with
their patients,[5] there is a paucity of data on experiences by those systems. The unique challenges
faced by pediatric organizations sharing notes based on legal mandates and confidentiality
concerns require careful consideration of privacy settings, a challenge for many electronic
health record (EHR) vendors.[6]
We report a unique perspective from pediatric subspecialty settings in contrast to
adult primary care populations. We will focus on the process of provider note sharing
and its consequences, and to that end, describe our journey as a pediatric integrated
delivery network inclusive of both medical and surgical subspecialties that now shares
notes by default with caregiver proxies and teens.
Journey
[Fig. 1] displays our timeline of events in provider note sharing as defined by making a
note available to be shared in the patient portal irrespective of whether the patient
has signed up for portal access. Opt-in refers to manual note sharing (provider chooses
to share the note) and opt-out refers to system default provider note sharing where
the provider must choose to not share the note. The journey began in August 2015 with presentations regarding OpenNotes
at medical staff meetings based on a pilot project in the Developmental Services Department.
Buy-in from physicians was initially tenuous. Cited concerns regarding consequences
of provider note sharing included: increased volume of patient messages, families
unable to understand medical documentation, need for providers to document differently,
increased requests to amend provider visit notes, damage to the provider–patient relationship,
and inadvertent sharing of sensitive information. Faced with these concerns, we began
with opt-in provider sharing (manual release) of provider visit notes across most
clinical arenas over the subsequent 2 to 3 years. However, provider note sharing rates
were universally poor (see [Fig. 2] and the “Results” section).
Fig. 1 Timeline of events in note sharing.
Fig. 2 Control chart of shared notes plotted against opt-in and opt-out note sharing.
Faced with almost nonexistent provider note sharing, in February 2017, the Rady Children's
Health Network (RCHN) Family Advisory Council wrote a letter to the Chief Medical
Information Officer requesting universal note sharing, citing four advantages: better
understanding of treatment plans and goals, increased family involvement, patient
safety, and added value to the patient portal. Furthermore, they stated, “to those
who might believe that the notes will cause unnecessary worry, we would argue to the
contrary. Information is a wonderful antidote to fear.” This letter prompted us to
issue a call for opt-out provider note sharing in November 2017 receiving rapid approval
from physician leaders. We began universal opt-out provider note sharing of subspecialty
provider visit notes in March 2018, inpatient discharge summaries in June 2018, and
emergency department and urgent care provider notes in August 2018.
Our journey has led to our current system settings to default share clinical notes
unless marked as sensitive by the authoring provider. Child abuse and psychotherapy
notes are default set to not be shared per our system settings. For patients less
than 12 years old and/or with diminished capacity, default release of shared notes
occurs to the proxy (generally parent/guardian). For patients aged 12 years and older,
notes are only released to the patient, ensuring the protection of reproductive health
information. Teen access requires parental consent.
Methods
We present results from our evaluation of every shareable note from April 2017 through
March 2019. This timeframe was chosen to provide an equal duration for comparison
between the preintervention or opt-in period (April 2017–February 2018) and the postintervention
or opt-out period (March 2018–January 2019). Given the different timelines in note
release settings across various arenas, we focused our analysis on ambulatory subspecialty
provider notes excluding emergency department, urgent care, and discharge summary
notes.
An individual note written by a provider is defined as shareable if it is available
for viewing in the patient portal. The decision to mark a note as sensitive or to
block from sharing occurs at the note level by the provider, a process that formally
changes the note's sharing status. During the opt-in period, the provider was required
to manually select “share note with patient.” During the opt-out period, notes were
automatically shared with the patient or proxy unless the provider manually unselected
“share note with patient.” Notes are not shareable if they are (1) written in a child
abuse or mental health clinic, (2) marked as sensitive by the provider, or (3) blocked
from sharing by the provider. Notes originating from a child abuse or mental health
clinic or those marked as sensitive are never shared. For a patient 12 years and older,
the notes shared are only viewable by the patient him/herself/themselves unless he/she/they
have diminished capacity. For a patient younger than 12 years or a patient with diminished
capacity, the notes are shared with the medical proxy.
We developed a Structured Query Language-based report to determine the sharing status
of each note written, that is, whether or not it was available for viewing in the
patient portal. This enabled us to evaluate which providers and specialties were sharing
notes and how note sharing changed over time. For patients whose note was written
at a time when they did not have an active portal account, the note sharing status
reflects whether the note would be available in the future should the portal account
become activated.
We limited our analysis to notes written about youth 0 to 17 years and authored by
a provider (fellows, physicians, or advance practice providers). Notes authored by
residents require cosignature by the attending physician per policy and thus were
counted as a note written by the attending physician. Subspecialty clinical area share
rates are presented before and following opt-out note sharing. We also examined share
rates according to subspecialty with share rate percentages determined by dividing
number of shared notes by number of total notes by providers of a given subspecialty.
To evaluate whether medical note sharing resulted in an increased work burden to providers,
and as a balancing measure, we measured overall patient message volume during both
the opt-in and opt-out periods for comparison. We also reviewed patient health information
management (HIM) requests for amendments to medical notes.
RCHN utilizes Epic Systems Corporation's EHR, which includes the Epic MyChart patient
portal. Note release settings (i.e., share with patients and note sensitivity) are
based on standard built-in functionality. We did perform a custom build to flag patients
with diminished capacity and to ensure that notes, when shared, would be released
to the medical proxy rather than the patient once he/she/they reached an age of 12
years.
Results
Opt-In Provider Note Sharing Period
From April 2017 to February 2018, during the opt-in provider note sharing period,
a total of 221,655 notes were shareable based on organizational policies. Providers
marked 77 of these notes as sensitive, leaving 221,578 not sensitive and thus available
to be shared. Of these nonsensitive shareable notes, only 224 (0.1%) were actually
shared meaning that the provider opted-in to share the note with the patient or proxy.
A total of 34 notes shared were read by patients or their proxies (13.8%). During
this time, providers received a total of 33,415 patient messages via the patient portal,
which equates to about one message for every 6.6 notes written. The HIM department
received four formal chart amendment requests during this time.
Opt-Out Provider Note Sharing Period
From March 2018 to January 2019, during the opt-out provider note sharing period,
providers wrote a total of 224,960 shareable notes. Providers marked 343 of these
notes as sensitive, leaving 224,617 not sensitive and thus available to be shared
([Fig. 2]). Of the nonsensitive shareable notes, 191,379 (85%) were actually shared with patients
or proxies meaning that the provider did not override the system default to share.
Equivalent portions of notes written on patients with (86%) and without (87%) an active
portal account were shared. While this difference was statistically significant (p < 0.001), it does not appear to be meaningful. Overall note sensitivity rates increased
during the opt-out period (0.15% vs. 0.03%, p < 0.001), which may reflect provider hesitancy in sharing some note content with
patients. Note sensitivity status, however, did not differ based on patient portal
activation status (0.15% vs. 0.16%, active vs. not active, p = 0.45). A total of 3,159 (1.7%) of the notes shared and accessible via the patient
portal were read by either patients or their proxies. During this time period, a total
of 38,076 patient messages were received by providers via the patient portal, which
equates to about one message for every 5.9 notes written. The HIM department received
five formal chart amendment requests during this time.
There is notable variation in note sharing across subspecialties at our institution.
Among 34 subspecialty clinical areas (26 medical and 8 surgical), provider share rates
ranged from a low of 9 to 100%. Of the 34 subspecialty clinical areas, one demonstrated
poor provider share rates (0–25%); none demonstrated fair provider share rates (26–50%),
7 demonstrated good provider share rates (51–75%), and 26 demonstrated excellent provider
share rates (76–100%). Provider share rates did not particularly differ according
to provider classification by medical versus surgical subspecialty (p > 0.05). Anecdotally, providing divisional and individual level note sharing data
to low share rate specialties after the study period has resulted, in most cases,
in a substantial increase in note sharing.
Discussion
Our journey to improve provider note sharing in a pediatric subspecialty setting has
provided several insights. Default release of notes with an opt-out option was the
most effective system setting to achieve widespread provider note sharing with patients
or proxies. Even though stakeholders and providers endorsed provider note sharing,
requiring providers to actively opt-in by adding an extra click to their workflow
proved to be a significant barrier. Behavioral economics may provide additional insight
into our success with opt-out provider note sharing. It likely reflects the status
quo bias where people frequently exhibit inertia tending not to deviate from the default
option, as has been shown in other case scenarios (organ donation,[7] retirement savings,[8] and flu vaccination[9]).
The Agency for Healthcare Research and Quality[10] recommends early and extensive patient and provider engagement when implementing
open access to clinical notes, and we began this journey by getting buy-in from both
patient and provider stakeholders. Given provider concerns, we began by allowing providers
to opt-in to share notes. We discovered quickly that this was not effective and thus
pivoted to default release of notes with immediate demonstration of marked improvement
in provider note sharing rates ([Fig. 2]). Provider concerns that note sharing would lead to increased workload and/or increased
requests for editing of medical documentation did not materialize.
Institutional share rates may mask variability in share rates by specialties and providers,
making it difficult to address specific provider concerns about note sharing. Having
granular data by specialty and provider allowed us to evaluate differences in provider
note sharing. While we have yet to extensively evaluate the reasons underlying these
differences, we recognize that anecdotal experiences can significantly influence note
sharing. However, simply feeding back data on share rates to individual specialties
has positively influenced provider share rates. Allowing providers within a specialty
to see how their share rate compares to that of peers within and relative to other
specialties has prompted dialogue to address concerns and build confidence that note
sharing will not be unduly burdensome. Further, sharing provider note share rates
may have leveraged the behavioral economic principles of social forces and comparisons
to further promote provider note sharing.[11] Success often breeds success. Our positive provider note sharing experience in ambulatory
subspecialty clinics subsequently translated to noneventful default provider note
sharing of emergency, urgent care, and discharge summary notes.
To facilitate adoption of this functionality, we shared information from the literature
on the benefits to the patient and limited risks to the provider. We leveraged experience
from our developmental services experience as well as from providers who were early
adopters in embracing the technology. We also engaged patients through our Family
Advisory Council bringing the message from the patients directly to the providers.
This proved the most effective as it shifted the conversation away from how note sharing
would impact providers to how it would benefit patients.
One area of concern raised is the appropriateness of providers' sharing notes with
adolescents. Currently, we default release notes to patients 12 years and older and
have had no issues although the number of youth with their own portal account is low.
Commonly cited reasons for providers to not share medical notes with adolescents include
potential harm via loss of confidentiality and inability to comprehend medical notes.
Prior work at our institution disputes this. Since our default release of medical
notes, a cohort of adolescents and young adults with chronic gastrointestinal disease
demonstrated notable satisfaction with their provider visit documentation, adequate
health literacy, and comprehension of their medical notes without any reported adverse
events.[12]
There are limitations to our findings. First, data presented only reflect the experience
at a single institution. However, there are limited data in the literature regarding
note sharing particularly in the pediatric setting and we hope that broad sharing
of our experience will help other pediatric institutions to improve provider note
sharing. Second, we demonstrate very low note reading rates by patients. The current
work focused on the necessary preamble to note reading, that is, note sharing. Moving
forward, we are now focusing on how to improve note reading rates so that the benefits
of note sharing can be fully realized by our patients and families.
Future areas of improvement include continued improvement in provider note sharing
practices and the evaluation of the subsequent process of note sharing, note reading,
including studying how note reading impacts patient or proxy understanding of medical
conditions and improves health outcomes. We also plan to allow the patient or proxy
to contribute directly to the note, which we believe will not only promote patient
safety through more accurate documentation but also improve provider efficiency. Behavioral
health note sharing also has the potential to improve outcomes and increase patient
engagement.[13] While we have yet to provide routine access to behavioral health notes at our institution,
we are currently collecting pilot data toward such sharing to inform efforts to promote
sharing of these notes. Through the work presented, we submit that we have made strides
in, and added to the conversation regarding note sharing, governance, and deployment
in the pediatric setting.
Conclusion
We found that system-wide default settings to share significantly improved provider
note sharing rates. Marked differences in provider note sharing, however, do exist
between specialties and by providers within specialties. Requiring providers to actively
share notes did not produce meaningful provider note sharing rates. Following institution
of opt-out default note sharing, provider-cited concerns regarding increased patient
message volumes have not materialized. Of note, while default provider note sharing
led to a significant increase in provider notation of notes as sensitive, rates of
notes marked sensitive remained quite low. The adequacy and/or appropriateness of
such denotation require further evaluation.
Clinical Relevance Statement
Clinical Relevance Statement
Patients and families have increasing expectations of improved communication and medical
decision sharing with their medical providers. As organizations move toward a more
open and transparent method of sharing medical information and decision making by
making notes available to patients, it is important to recognize the methods that
can lead to a successful implementation of note sharing.
Multiple Choice Questions
Multiple Choice Questions
-
When implementing provider note sharing at your organization which method would you
choose based on our experience and findings?
-
Opt-in (manual) release of provider notes requiring the provider the mark the note
for sharing the EHR.
-
Automatic/default release of provider notes with the ability to opt-out for individual
notes.
-
Natural language processing-driven algorithm to select notes appropriate for sharing.
-
Using a machine learning algorithm that evaluates the diagnoses and problem list for
the patient to decide whether to share the note.
Correct Answer: The correct answer is option b, our experience and our data demonstrate that providers
are unlikely to change the default option in the EHR. The greatest success in note
sharing was when our organization pivoted to default release of notes leading to a
share rate of 85%. Allowing providers to manually select which notes to release did
not lead to any substantial sharing of notes with patients.
-
When evaluating note sharing at your organization what level of detail provides more
clarity of note sharing practices?
-
Overall organization note share rate.
-
Note share rate by geographic area of the clinics.
-
Individual provider note share rate.
-
Department or medical specialty note share rate.
Correct Answer: The correct answer is option c, although a great deal of information can be gleaned
at the overall organization level, delving deeper into the data can provide more information
about and help identify provider groups with low share rates. We also found that,
although looking at individual departments may provide important group information,
if one does not look at the individual providers, low provider share rates can be
obscured by the higher share rates of their colleagues. Therefore, we recommend looking
at note sharing rates at the provider level.
