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.

1 INTRODUCTION

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.

2 BACKGROUND

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

654

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

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

profession.

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

655

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 state’s

“medical emergency” exception under its state

abortion bans. (Zurawski vs. State of Texas, March 6,

2023).

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?

3 MITIGATION STRATEGIES

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

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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

Information

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.

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657

3.3 Clarify Standard Medical

Terminologies

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

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conflated with medical terminology, nor enshrined in

policies that stigmatize or negatively impact patient

care.

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.

4 CONCLUSIONS

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

659

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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