Evaluation of the Role of the Informatician after Changes in the
Legislative Landscape of Women’s Reproductive Health
Rebecca A. Meehan
and Julaine Clunis
School of Information, Kent State University, Kent, OH, U.S.A.
School of Information Studies, University of Wisconsin Milwaukee, Milwaukee, WI, U.S.A.
Keywords: Role of Health Informatics, Security of Health Information, Terminologies, Women’s Health, Legislation.
Abstract: In the United States, on June 24, 2022, the Supreme Court removed constitutional rights for abortion in the
Dobbs v. Jackson Women’s Health Organization decision, which had been precedent for almost 50 years.
Given these legal changes, how do health informaticists continue to use data and information to improve
health and healthcare, when that data may, quite plausibly, diminish the quality of care for girls and women.
This position paper discusses three strategies for health informaticians to improve health and healthcare in
light of these recent legislation changes: 1) education and training of patients and stakeholders on limitations
of HIPAA and on the importance of maintaining privacy and personal health information; 2) strengthening
the protection of personal health information for women’s reproductive care by re-categorizing it as ‘sensitive’
information, similar to behavioral and mental health data; and 3) clarify medical conditions by evaluating
medical vocabularies and coding structures that accurately reflect the clinical realities of reproductive care.
Legal and regulatory changes can create a necessity
for alignment of the health informatics profession. In
the United States, on June 24, 2022, the Supreme
Court removed constitutional rights for abortion in
the Dobbs v. Jackson Women’s Health Organization
(2022) decision, which had been precedent for almost
50 years. Given these legal changes, how do health
informaticists adjust to do their job successfully? In
response to the Dobbs legal decision, Arvisais-
Anhalt, et al (2023) present a call to action among
clinical informaticists (there are over 80 co-authors
on Arvisais-Anhalt, et al) to “actively leverage our
expertise, codify ethical and professional obligations
in healthcare and support patient care.” They identify
8 specific areas for health informaticists to address.
(Arvisais-Anhalt, et al, 2023). The health informatics
profession adjusts with these changes but stays
aligned with its primary focus of “using data,
information, and knowledge to improve health and
the delivery of health care services” (AMIA, 2023).
The data and information the health informaticist
helps to collect, analyze and share may no longer
meet the challenge of improving health and
healthcare, but quite plausibly, it may diminish the
quality of care for girls and women, and may, in some
circumstances, be harmful.
These policy changes have significant implications
for clinicians and patients (Huff, 2022; Simmons-
Duffin, 2022). Amidst the impact to primary
healthcare stakeholders, we need to consider the
health informatics profession, and their role in
facilitating the access, storage and sharing of health
information to improve health and healthcare.
Improving secured access and sharing health data
with permissions has demonstrated benefits and
frames many informatics initiatives in healthcare
(Menachemi, et al, 2018; Kalkman, et al, 2019). The
importance of sharing data has also been
demonstrated through policy changes in the HITECH
Act (2010) and 21st Century Cures Act (2016), as
well as a recent federal rule to remove information
blocking efforts (DHHS, 2023) (Khanna, et al 2023).
This creates the context for the everyday work of a
health informaticist.
Informaticists integrate health IT into their work,
like the electronic health record (EHR) which is
designed not to be used in a silo, but instead to be
widely accessed by other approved health care
stakeholders in the care team, across many locations.
The need to protect personal health information has
always been important, but potential health
implications for women and girls from this legal
Meehan, R. and Clunis, J.
Evaluation of the Role of the Informatician after Changes in the Legislative Landscape of Women’s Reproductive Health.
DOI: 10.5220/0012434200003657
Paper published under CC license (CC BY-NC-ND 4.0)
In Proceedings of the 17th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2024) - Volume 2, pages 654-661
ISBN: 978-989-758-688-0; ISSN: 2184-4305
Proceedings Copyright © 2024 by SCITEPRESS Science and Technology Publications, Lda.
change reaffirm this need. Shared or viewable health
information in the wrong place could cause harmful
outcomes for patients. Khanna and colleagues (2023)
identify areas of risk where reproductive health
information may be compromised including: EHR,
health information exchange (HIE), billing records,
lab imaging and pathology records, medications, and
server locations. Health informaticists need to
evaluate each of these access points that might
compromise a patient’s personal health information
around reproductive health care.
The health informatics profession has an
opportunity to reframe a strategy on how best to use
data, information, and knowledge to improve health
and healthcare. Health informaticians need to work
with their health care stakeholders among patients,
administrative, clinical and technical teams to review
processes for how and when to leverage health IT,
access, store and share data in the context of women’s
reproductive care. For example, some applications
may include:
The EHR may not be needed in all circumstances
or consider modification of documentation
strategies during pregnancy (Khanna, et al, 2023).
Always ask the patient if they permit the use of AI
tools to listen during a patient encounter, instead
of just allowing the clinician to take notes. Make
it easy for the clinician to disable a listening/ note
taking tool.
For patients using a consumer mobile device to
gather information related to reproduction (e.g. to
monitor menstrual cycle), there should be
consumer information and reminders to patients
that this information may not be protected under
HIPAA, and instead only the Federal Trade
Commission (FTC) which does not have
protections for personal health information.
Patients can opt out of sharing data on an HIE and
should be reminded of opportunities to share or
not share their information.
These are just a few examples of the strategies and
day to day processes of working with clinicians,
patients, and health IT tools to maintain privacy of
personal health information. Whether you agree or
disagree with the legislation change, it has a ripple
effect across health care professions and requires
health informaticians to examine the impact on their
2.1 Different State Laws
While the federal law change was immediate, state
laws are emerging. Thus, there are 50 possible sets of
rules and regulations (Felix, et al, 2023), creating
confusion for clinical care teams, informaticists and
patients on how to seek, offer, communicate, and
code reproductive care issues accurately, securely and
in a way that provides the best health outcomes for
patients. In 2023, many states have enacted laws,
some providing reproductive freedom (California
State Law, 2022) and others banning abortions
outright, with consequences for family or friends who
help someone seek an abortion and the health
professionals who perform an abortion (SB8, Texas
State Law, 2021; Felix, et al, 2023; Spitzer &
Buchanan, 2022). Some laws result in felony charges
and the loss of medical licenses to practice (SB8,
Texas State Law, 2021). Because of the relative
newness of the change in federal law, there continue
to be court challenges and ballot measures to update
and change state laws. It is likely these laws will
continue to shift in the years to come. Because of the
ambiguity of laws, the newness and immediate time
frame, and a large divide on this political issue, there
may be unintended consequences, having a broad
impact on women’s healthcare in general.
2.2 Potential Health Consequences
Both a decrease in the number of obstetrician and
gynecologist (OB-GYN) physicians available and the
standard of care maintained are at risk. The Kaiser
Family Foundation funded a national survey of OB-
GYN experiences after the federal law change, where
researchers found that ...over a third of OBGYNs
nationally (36%), and half practicing in states where
abortion is banned (55%) or where there are
gestational limits (47%), say their ability to practice
within the standard of care has become worse.”
(Frederiksen, et al 2023). Recent data demonstrate
that a growing number of OB-GYNs and maternal-
fetal medicine specialists (MFMs) are likely to leave
states with abortion bans (Tobin-Tyler, et al, 2023).
These trends are also starting to be seen among
medical student seniors who are applying for OB-
GYN residencies. “The Association of American
Medical Colleges (AAMC) found that states with
near-total abortion bans saw a 10.5% decrease in OB-
GYN applicants who were M.D. seniors this year."
(Dreher & Gonzalez, 2023).
2.2.1 Miscarriage
While these legislative changes limit access to
abortion, an unintended consequence is the impact on
care for women experiencing a miscarriage. There is
misleading and confusing language about the legality
Evaluation of the Role of the Informatician after Changes in the Legislative Landscape of Women’s Reproductive Health
and legal consequences of caring for women
experiencing a miscarriage, or those seeking birth
control or going through fertility treatments.
Simmons-Duffin (2022) described the case of a
woman and her husband traveling to Ohio for a family
wedding, who then presented to an emergency room
in Ohio with signs of a miscarriage, but was
monitored and sent home stable, although in
continued distress, indicating they would not be able
to treat her. Simmons-Duffin (2022) outlined that
because health care providers use the same clinical
tools to manage a miscarriage as they do to perform
an abortion, a pharmacist or doctor who suspects a
patient is seeking an abortion might delay or deny
care because of potential prosecution and revoking of
a professional license. In another case, a group of
women affected by these changing laws in Texas are
suing their state for denying necessary and potentially
life-saving obstetrical care because medical
professionals throughout the state fear liability under
Texas’s abortion bans (Zurawski vs. State of Texas,
March 6, 2023). While many state laws have
exceptions for the life of the mother, there remains
confusion over what constitutes an emergency. This
Texas case seeks to clarify the extent of the states
“medical emergency” exception under its state
abortion bans. (Zurawski vs. State of Texas, March 6,
There are ripple effects beyond the confines of the
clinician’s office between the doctor and patients.
These changes also impact consumer healthcare
through limitations on related medications (e.g.
Misoprostol) for treating miscarriage that pharmacies
can choose to sell to consumers or not (Kaiser Family
Foundation, 2023; Pinatado, 2022); freedom to travel
to other states for reproductive health care (Bendix,
2023); and the potential for community citizens to
bring a civil case against people suspected of
performing an abortion or helping someone in this
effort (SB8 Texas State Law, 2021). These many
legal changes for women’s reproductive health in the
United States, present challenges for the health
informatics profession. How do we, as health
informaticians, continue to use data and information
to improve health and healthcare for both patients and
their clinical care teams?
This position paper proposes three strategies for
health informaticians to improve health and
healthcare considering recent legislation changes.
They include: 1) education and training of patients
and medical staff on the importance of maintaining
privacy and personal health information in the context
of new law changes in reproductive health; 2)
strengthening the protection strengthen protection of
personal health information for women’s
reproductive care by re-categorizing it as sensitive’
information, similar to behavioral and mental health
data; and 3) assessing standard medical terminologies
and the potential risks associated with the
interoperability they support.
3.1 Education and Training
The first strategy involves educating patients about
the limitations of The Health Insurance Portability
and Accountability Act (HIPAA) and the lack of
protection of personal health information when using
many consumer health apps. Moreover, it is important
to have continued re-training among medical staff and
informaticians related to the importance of
maintaining privacy of personal health information in
the context of women’s reproductive health. To
address this, it is important to review the HIPAA
Privacy Rule, and revisit the ethical standards of the
health informatics profession.
3.1.1 Personal Health Information
The Privacy Rule of HIPAA provides the first
comprehensive federal protection for the privacy of
health information. However, this does not mean that
health data, including reproductive health care data,
cannot be shared. The Privacy Rule created a national
standard to protect individuals’ medical records and
other personal health information. While the rule
gives patients more control over their health
information and sets boundaries on the use and
release of health records, it does not stop law
enforcement functions from continuing. The Rule
allows covered entities (e.g., health insurance
companies, HMOs, etc.) to disclose protected health
information (PHI) to law enforcement officials,
without the individual’s written authorization, under
specific circumstances (e.g., to comply with a court-
ordered warrant, subpoena, or summons). Shachar
(2022) cuts to the chase by noting “HIPAA will not
protect patients’ privacy in the face of virtually any
legal proceeding (civil or criminal), especially if
warrants, discovery requests, subpoenas, and law
enforcement are involved.” Thus, patients need to
expect that their health care records around
reproductive health will be accessible through court
order. Moreover, patients should be educated on the
“very real risk that digital data mining could be used
HEALTHINF 2024 - 17th International Conference on Health Informatics
to support abortion-related prosecutions and civil
actions.” (Shachar, 2022). Thus, as Walker and
colleagues (2022) note, “...strengthening privacy
protections in HIPAA, such as limiting law
enforcement’s access to sensitive data in health
records, should be a key goal to minimize the trade-
offs between protection and sharing incomplete
records.” As patients are more engaged as consumers
of health information, there is a growing use of health
mobile apps for any number of health management
issues, including monitoring of menstrual cycles for
women. It is important to inform consumers that
personal health information shared on these apps is
not protected by HIPAA. While this notification may
be issued in the “fine print” for some apps, it is
worthwhile to examine the clarity of the information,
to allow informed consumer choice.
3.2 Re-Categorize as Sensitive
The second strategy, also suggested for consideration
by other informaticians (Walker, et al, 2022; Khanna,
et al, 2023; Clayton, et al, 2023), involves
strengthening existing mechanisms for protecting
health information, by re-categorizing data and
information about women’s reproductive health care
as ‘sensitive’ information, and have it follow the
precedent of protecting behavioral, addiction or
mental health information. Health language
sensitivity codes were developed based on the federal
regulations outlined in 42 CFR Part 2 (Confidentiality
of Substance Use Disorder Patient Records) in order
to limit the use and disclosure of sensitive health
information that may have unexpected or
unanticipated negative consequences to a person’s
wellbeing in terms of social and work life (Adams and
Sutton, 2021). Using this strategy, health
organizations would need to filter information around
women’s reproductive health to follow workflow
patterns of segmentation. Beyond the overall federal
mandate (42 CFR Part 2) individual state mandates
on how to treat segmented sensitive information can
vary, so there will be inconsistencies.
Currently, there is no additional mandate in the
state of Ohio to provide additional segmentation, and
many provider offices (e.g., behavioral or mental
health providers) choose to create separate electronic
health records (EHR) for segmented information and
could choose to obscure and protect the information
in this way. However, this data may no longer be
obscured when it is integrated into a wider health
record in the health system. There is not one
prescribed way to accomplish this, and it is applied
differently across all states. Although there were
other health categories that used to be obscured (e.g.
HIV status), these regulations have fallen away over
time. Moreover, covered entities like payers or health
insurance companies are able to see this data without
it being obscured, following a typical workflow for
health data. That is, when it is reviewed for payment
or reimbursement, payers follow a typical workflow
for protecting all personal health information,
including sensitive information.
Often a patient’s data needs to be shared using a
health information exchange (HIE). Each of the 50
states in the US has its own policy on opt-in vs. opt-
out, vs. how to treat “sensitive information” (see State
HIE Opt-In vs Opt-Out Policy Research_09-30-
16_Final PDF at www.healthit.gov). At the state
level, the HIE may receive segmented data with some
data obscured, depending on the policies of the
individual health systems sending the file. Walker
and colleagues (2022) suggest that pregnancy status
should be prohibited to disclose to HIE networks
without explicit patient consent. This would be
complicated as many elements of a pregnancy
diagnosis can be viewed across the EHR (e.g. images,
lab results, etc.). One extra protection for patients
who want to maintain privacy, is actively choosing to
“opt out” of sharing information in the HIE. On a
practical level, many patients may have given
permission to exchange information earlier in their
health journey but may not realize that they can
change their mind and opt out at any point. Efforts
should be made to educate patients that they have the
choice to opt-out of sharing health information on the
HIE at any time. It does not mean that the data will
not reside in the original file, but that it will not be
shared with other sites without their permission. It is
a communication point that is too often overlooked.
3.2.1 Unintended Consequences
This strategy of re-categorizing reproductive care as
sensitive data may have potential unintended
consequences. Throughout routine obstetric care of a
pregnant person, it is crucial for the care team to have
insight and information about the person’s health
without being precluded from seeing pertinent
information. For example, clinicians need to know
about allergies, family history, diabetes or
hypertension. Any barrier to this information that a
‘sensitive data’ classification may create could lead to
complications at the point of care.
Evaluation of the Role of the Informatician after Changes in the Legislative Landscape of Women’s Reproductive Health
3.3 Clarify Standard Medical
The third strategy is about adding clarity to describe
someone’s health condition using standard medical
terminologies. It is important to have a critical
assessment of standard medical terminologies, areas
to improve clarity and the potential risks associated
with the interoperability they support. The healthcare
landscape comprising a spectrum of stakeholders
including clinicians, patients, medical and laboratory
technicians, pharmacists, insurance providers,
administrators, government agencies, and researchers
– relies heavily on the constant and multifaceted
exchange of data exchange. Clinical standard
terminologies, such as the International Classification
of Diseases (ICD), Current Procedural Terminology
(CPT), Systematized Nomenclature of Medicine –
Clinical Terms (SNOMED CT), and Logical
Observation Identifiers Names and Codes (LOINC),
RX Norm, and other classification schemes have been
mandated for use in healthcare to represent complex
medical conditions, ensuring standardization across
various healthcare systems and contexts. These
terminologies, as types of knowledge organization
systems (KOS), are key in eliminating ambiguity,
controlling synonyms, establishing hierarchical and
associative relationships, representing the underlying
semantic structure of medical domains (Zeng, 2008).
Health KOS are categorized into administrative
terminologies which support billing, reimbursement,
classification and data aggregations, clinical
terminologies developed for clinical data exchange
and aggregation, reference terminologies which act as
a reference point in health information systems and
interface terminologies which ensure interoperability
(Zeng et al, 2020).
The classification and nomenclature of women’s
reproductive health conditions within these schemes
bear significant consequences. The way conditions
are classified impacts insurance coverage,
reimbursement, and treatment appropriateness.
Misclassifications or vague definitions can hinder
access to necessary treatment and lead to suboptimal
care, and choice of terms can influence patient
perception and societal attitudes, or willingness to
seek care. Furthermore, the classification of
conditions like abortion holds legal and ethical
implications, particularly in regions with contested
reproductive health services. Within clinical settings,
practices such as categorizing abortions into elective
and non-elective procedures e.g., spontaneous, septic,
and induced abortions can carry stigma that influence
quality of care and access to care (Smith et al, 2018).
In addition, terms like ‘miscarriage’ and ‘ectopic
pregnancy’ are classified under specific codes in
ICD-10. For example, the term 'spontaneous abortion'
(003.0 in ICD-10) encompasses miscarriages due to
various causes, ranging from infections to genetic
abnormalities. Ectopic pregnancies are classified
under 'pregnancy with abortive outcome' (000-008).
Similarly, the Current Procedural Terminology (CPT)
system, which standardizes medical procedures for
billing, classifies abortions into various categories.
These include missed abortions (59820, 59821),
procedural abortions (59840, 59841, 58941-22),
medical abortions (59850-59852, 59855-59857,
S0199-,S0190, E/M code, E/M Code + 59414,
Delivery Code), and both complete and incomplete
spontaneous abortions, each with their respective
codes (ACOG, 2023). However, these medical terms
often diverge from everyday language, creating
potential misunderstandings, especially under
heightened legal scrutiny.
Given these complexities, the role of clinicians
and informaticians becomes increasingly crucial.
They must navigate the medico-legal landscape,
ensuring that legal and social terms do not conflate
with medical terminology. Informaticians have a role
to play with maintaining clarity in documentation and
coding, particularly for non-elective procedures, to
prevent stigmatization and legal risks to patients
seeking care, particularly in the wake of heightened
legal scrutiny following changes to reproductive
rights legislation. Although some states have
established exceptions – such as not criminalizing
care for procedures preventing substantial
impairment to a major bodily function the use of
ambiguous language and conflicting regulations
creates uncertainty among clinicians about which
clinical conditions fall under these exceptions (Felix,
et al, 2023; Goodwin et al. 2023).
Policymakers often seem to presume a universal
understanding of the concept of abortion, yet there is
a noticeable lack of alignment between legal and
policy contexts and the medical community. Heuser
et al (2023) illustrates this disparity by highlighting
how routine medical procedures like labor induction
or caesarean delivery could potentially fall under the
legal definition of abortion e.g. [Utah] the
intentional or attempted termination of a human
pregnancy through a medical procedure carried out by
a physician or through a substance used under the
direction of a physician as defined by States. This
legal definition can encompass both an abortion and
procedures like induction of labor and underscores
the importance of ensuring that critical nuances are
captured, and that legal and social terms are not
HEALTHINF 2024 - 17th International Conference on Health Informatics
conflated with medical terminology, nor enshrined in
policies that stigmatize or negatively impact patient
Informaticians also need to consider the
implications of standard terminologies in promoting
data exchange and semantic interoperability in
women’s reproductive health. Semantic
interoperability in healthcare refers to the ability of
different information systems, applications, and
devices to not only exchange data but also interpret
and use this data effectively across various platforms
and technologies. It involves using knowledge
organization systems to ensure that health data retains
its intended meaning consistently when shared among
diverse stakeholders (de Mello, 2022; Arvantis,
2014). However, it also raises concerns about privacy
and security, particularly considering legislation like
the 21st Century CURES Act which mandates sharing
and promoting the deployment of interfaces to
support health information exchange networks run by
a variety of entities such as electronic health record
vendors, third party non-profits, or by the states
themselves. The Cures Act uses the United States
Core Data for Interoperability standard which
includes pregnancy status as a shareable data element
(Walker et al, 2022). Since HIPAA does not protect
health information disclosures when court-ordered or
subpoenaed despite recently released guidance for
reproductive health, this data may still be at risk as
these entities are not required to but are permitted to
disclose (Shachar, 2022).
Electronic Health Records (EHRs) and patient
portals further complicate this landscape by
expanding access to health data, including to third-
party applications, thereby necessitating stringent
measures to protect sensitive patient information
(Charles, 2023; Carter et al., 2023). An example of
this is the use of integrated pharmacy information
systems, which, by feeding medication information
into the EHR, could inadvertently and inaccurately
indicate procedures like abortion or suggest potential
harm to a fetus. Additionally, the growing reliance on
cloud infrastructure presents another layer of
complexity. Data stored on servers in restrictive states
could potentially expose patients to legal risks if those
states opt to access data within their jurisdiction
(Khanna et al., 2023). This situation is further
aggravated by the increasing interconnectedness of
health systems. One specific scenario involves
services provided in non- restricted states potentially
becoming a part of the legal medical record in a state
with restrictive laws. If a provider either documents
out-of-state care or incorporates diagnosis codes for
elective procedures into the record, it could lead to
legal complications (Khanna et al., 2023; Zubrzycki,
2022). Such scenarios highlight the growing need for
careful and considered approaches to managing
health data across different legal jurisdictions.
In addressing these challenges, informaticians
have a critical role to play in leveraging data and
information to enhance health and healthcare. One
key area of focus is the review and update of medical
terminology standards. By aligning these with current
legal standards and societal understanding,
informaticians may be able to bridge the gap between
medical practice and legal considerations. They
should consider whether alignment or allowances in
terminology could make any tangible differences.
Another critical area is the development and
implementation of stringent data privacy protocols.
This is especially important for sensitive health data
stored in cloud infrastructures or shared through
integrated systems. Furthermore, informaticians
should perhaps take the opportunity to educate
stakeholders about the disagreement between terms
used in new reproductive health policies and laws and
the subtleties of medical terminologies and the
resulting implications. Advocating for standardized
terminologies that are consistent across states and
institutions might be an option for mitigating legal
and ethical conflicts. Finally continual monitoring of
legislative changes and their impact on health
information is vital. Informaticians can contribute to
shaping best practices and informing policy decisions
as it relates to proactively addressing challenges at the
intersection of medical terminology, legal
considerations, and patient care.
This position paper addresses the need to re-examine
the role of the health informaticist in the context of
changing laws around women’s reproductive care.
We discuss three informatics-based strategies for
improving health and health care, affecting the
individual patient and the clinical provider. Some of
these strategies align with other research groups,
lending to the potential for creating a solution.
However, all these strategies need to be evaluated for
advantages and disadvantages for patient health
outcomes. Specific initiatives will need evaluation
with considerations of strengths and unintended
consequences of implementing the approach. First, it
is important to educate patients about the importance
and methods of protecting personal health
information in general, limitations of HIPAA,
policies around sharing information in a HIE, and
Evaluation of the Role of the Informatician after Changes in the Legislative Landscape of Women’s Reproductive Health
risks of sharing health information in consumer-based
health apps and mobile devices. Second, it may be
helpful to reclassify reproductive health care as
“sensitive information,” providing additional
protection of personal health information and
heightened scrutiny of data sharing among healthcare
stakeholders. Third, emphasize the need to clarify
health conditions using medical vocabularies and
coding structures that accurately reflect the clinical
realities of reproductive care. This entails a
systematic approach to enhancing the representation,
categorization, and utilization of medical terms and
concepts related to women’s health. Consideration
should also be given to the risks of semantic
interoperability, particularly in how data is shared and
interpreted across diverse healthcare systems. It is
important to prevent misinterpretations or
inappropriate usage of sensitive health information
when handling data that is impacted by varying
regional and national legal frameworks.
While changes to federal laws may have an
immediate effect, implications for professional roles,
organizations, workflow, and interpersonal
communication are dynamic and evolve over time.
Therefore, a continuous review and revision of
professional roles in health care, including health
informaticists, is necessary to consider changes and
how they impact clinical care. It is important to
reassess and refine strategies for using data, and
information to support improvement in health and
healthcare, in a landscape marked by rapid change
and complex challenges.
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