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<article xmlns:xlink="http://www.w3.org/1999/xlink">
  <front>
    <journal-meta>
      <journal-title-group>
        <journal-title>November</journal-title>
      </journal-title-group>
    </journal-meta>
    <article-meta>
      <title-group>
        <article-title>A Realist Representation of Social Identity Data</article-title>
      </title-group>
      <contrib-group>
        <contrib contrib-type="author">
          <string-name>Amanda Hicks</string-name>
          <email>aehicks@ufl.edu</email>
          <xref ref-type="aff" rid="aff0">0</xref>
          <xref ref-type="aff" rid="aff1">1</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Ph.D.</string-name>
          <xref ref-type="aff" rid="aff0">0</xref>
          <xref ref-type="aff" rid="aff1">1</xref>
        </contrib>
        <aff id="aff0">
          <label>0</label>
          <institution>Department of Health Outcomes and Policy University of Florida Gainesville</institution>
          ,
          <country country="US">USA</country>
        </aff>
        <aff id="aff1">
          <label>1</label>
          <institution>necessarily represent the official views of NIH/NCATS or PCORI</institution>
        </aff>
      </contrib-group>
      <pub-date>
        <year>2015</year>
      </pub-date>
      <volume>4</volume>
      <issue>2015</issue>
      <abstract>
        <p>-Social identities merit special treatment in realist ontologies. Their ontological status is unsettled, so we should model them in a manner that is agnostic with respect to their ontological status. Nevertheless, there is a clear criterion for determining whether a specific person has a particular identity, namely, whether that person asserts that they do. This social act forms the basis for a realist representation, not of social identities themselves, but of data about social identities. We report the representation of social identities in the Ontology of Medically Related Social Entities and show that it supports data integration and retrieval.</p>
      </abstract>
      <kwd-group>
        <kwd>data integration</kwd>
        <kwd>demographic information</kwd>
        <kwd>ethnicity</kwd>
        <kwd>gender identity</kwd>
        <kwd>identity</kwd>
        <kwd>Ontology of Medically Related Social Entities</kwd>
        <kwd>race</kwd>
      </kwd-group>
    </article-meta>
  </front>
  <body>
    <sec id="sec-1">
      <title>-</title>
      <p>INTRODUCTION</p>
      <p>
        Demographic information is widely used in information
systems. In medical and health information systems they
support a variety of biomedical and informatics tasks such as
cohort discovery, statistical comparison of groups of people,
and record linkage [
        <xref ref-type="bibr" rid="ref2">2</xref>
        ]. Common demographic data collected in
medical settings include birth date, preferred language, race,
ethnicity and sex or gender. In 2011 the Institute of Medicine
recommended collecting information on sexual orientation and
gender identity (as distinct from biological sex) in electronic
health records [
        <xref ref-type="bibr" rid="ref3">3</xref>
        ], and Stage 3 for Meaningful Use requires
that electronic health records (EHR) certified for meaningful
use have fields for collecting information on sexual identity by
2018 [
        <xref ref-type="bibr" rid="ref4 ref5 ref6">4-6</xref>
        ]. It is, therefore, increasingly important to
semantically represent gender identity and other social
identities coherently to support data retrieval and integration.
[
        <xref ref-type="bibr" rid="ref2">2</xref>
        ] discusses previous work on realist representations of
demographic information in general in the Ontology of
Medically Related Social Entities (OMRSE).
      </p>
      <p>This paper describes social identities as a special subset of
demographic information and describes a realist representation
of social identities to support data retrieval and data
integration. This representation supports integration and
retrieval of data about people according to their social
identities. For the purpose of this paper, social identities
include (but are not be limited to) race, ethnicity, and gender
identity.</p>
      <p>Section Two describes the background assumptions, and
hypothesis of this paper. Section Three provides background
on data collection for gender identity, sexual orientation, race
and ethnicity, drawing important distinctions for understanding
the semantics of terms used to describe these types of social
identities. Section Four describes a framework for
ontologically representing social identities in OMRSE to
support semantic integration of demographic data. Section Five
describes the results of the validation of our representation with
competency questions. Section Six discusses results and future
work.</p>
      <p>II.</p>
      <p>
        BACKGROUND ASSUMPTIONS AND HYPOTHESES
[
        <xref ref-type="bibr" rid="ref2">2</xref>
        ] notes that demographic data are about a heterogeneous
group of things; they may include data about preferred
language, biological sex, gender identity, race, date of birth,
and marital status. The ontological status of some of these
entities is clear. Biological sex is a quality of an organism [
        <xref ref-type="bibr" rid="ref7">7</xref>
        ];
date of birth is a time interval; and marital status is the result of
a contractual act. However, the ontological status of race,
ethnicity, and gender identity is controversial [
        <xref ref-type="bibr" rid="ref8">8, 9</xref>
        ]. For this
reason, this paper does not attempt to answer the question,
what kind of things are race, ethnicity, and gender identities?
Instead, it places the process of asserting an identity at the
center of a realist represention of social identity data in
OMRSE.
      </p>
      <p>We begin our work with the assumption that there is a
difference between demographic data such as gender identity,
race, ethnicity, on the one hand, and sex, birth date, and marital
status on the other. Although the latter group is heterogeneous,
its members do share something significant in common;
statements about each can be verified as inter-subjective facts
about the world. Although we often gather data about a person
by asking questions such as Are you male or female?, What is
your birth date?, and Are you married?, biological sex, birth
date, and marital status refer to inter-subjective features of the
world. If by ‘sex’ we mean karyotypic or phenotypic sex, we
can perform genetic testing to determine a person’s karyotype
or a physical examination to determine phenotype. While we
cannot directly observe the date of a person’s birth, once the
event is completed, a birth date is something that multiple
people observe and come to consensus on. We can determine
that a person is married by producing a marriage certificate; if
there is no marriage certificate, there is no marriage. In this
sense, reports of one’s own sex, birth date, and marital status
are corrigible in the face of facts about the inter-subjective
world. However, reports of one’s own gender identity, race,
and ethnicity are not similarly corrigible. That is, if Jane says
that she is a black, Latina, woman, she has already provided all
the information we can hope to acquire to determine and verify
her race, ethnicity, and gender identity. There is nothing in
either the physical or social the world that we can consult to
verify the truth of these claims unless it is to return to Jane
herself and ask her to verify these statements.
subjective report of their identity rather than an objective or
inter-subjective criterion.</p>
      <p>Nevertheless, it seems that it is possible for Jane to provide
misinformation about at least some aspects of her identity. For
example, one might object that if Jane has white, non-Latino
parents who insist that Jane herself is neither black nor Latina,
that this constitutes intrasubjective evidence that her claims are
false. This scenario underscores the importance of the context
of data collection for determining the meaning of the data
collected. As we will see in the next section, the race and
ethnicity data collection practices and guidelines prevalent in
U.S. healthcare system explicitly rule out defining race and
ethnicity in terms of “blood” quotas or other inclusion criteria.
Furthermore, the definitions that do exist for these terms are
seldom presented to respondets. The result is that the data that
are currently, routinely collected only tell us how the person
actually identifies themselves. Notice how this affects the case
where Jane’s parents are white, non-Latino. In the absence of
clear inclusion and exclusion criteria for “white” and “Latino”,
all we know is that Jane’s parents identify themselves as white
and non-Latino. This does not rule out Jane having reasons to
identify some other way. Finally, we may be concerned that
Jane has deliberately provided misinformation about her
identity. There are two things to note about this scenario. First,
no ontology can get around the problem of potential dishonesty
or bad data collection practices, nor are they intended to.
Second, even in the broader context of data management we do
not regard this as a pressing issue since, we have no reason to
suspect that providing deliberately misleading inforamtion
about one’s identity is a common enough pratice to effect the
results of data quality and data analysis significantly.</p>
      <p>Our hypothesis was that representing social identity data
with respect to the process of identifying rather than in terms of
identities themselves can support data integration and retrieval
in a realist framework while avoiding controversial ontological
commitments.</p>
      <p>III.</p>
      <p>DATA COLLECTION FOR GENDER IDENTITY, RACE, AND</p>
      <p>ETHNICITY</p>
      <p>
        For the purpose of this work we have adopted the definition
and characterization of gender identity in [
        <xref ref-type="bibr" rid="ref1">1</xref>
        ]. For race and
ethnicity we use the Office of Management and Budget (OMB)
definitions and guidelines[10] since this standard is already
widely used in biomedicine. Most medical terminologies,
coding schemes, and surveys use terms that are intended to
comply with the Office of Management and Budget (OMB)
minimum set of categories for race and ethnicity [11, 12].
A.
      </p>
    </sec>
    <sec id="sec-2">
      <title>Gender identity</title>
      <p>
        Table 1 contains definitions of terms related to sex and
gender as presented in [
        <xref ref-type="bibr" rid="ref1">1</xref>
        ]. These definitions have been
influential in shaping the discussion of the collection of data
about gender identity [11] and conform to standard usage
where the distinctions between (a) sex and gender and (b)
gender expression and gender identity are observed.
      </p>
      <p>By examining these definitions we can see that the
verification criteria for gender identity is the individual’s own</p>
      <p>Gender identity does not refer to biological and
physiological characteristics since it is distinct from biological
sex. Furthermore, gender identity cannot be ascertained or
verified by gender expression. Consider two cases. 1) Some
trans individuals have not socially transitioned to their
perceived identity. A biological male who lives as a man but
has a subjective sense of being a woman may have a masculine
gender expression that would not be indicative of their
feminine gender identity. 2) Some people adopt the cultural
norms associated with a particular gender expression, but
identify differently. For example, a non-binary person may
have a masculine gender expression without identifying as a
man.</p>
      <p>The Office of Management and Budget (OMB) has defined
a minimal set of categories for collecting data on race and
ethnicity in the U.S. Census. These categories are also used in
health care settings and health research in the U.S. [11, 12]. It
is important to note that, while the OMB defines the minimum
race and ethnicity categories partially in terms of genealogy,
they explicitly do not regard the categories as naturalistic,
anthropological, or scientific, but instead as social-constructs.</p>
      <p>Furthermore, they encourage self-identification in the data
collection process wherever possible [11].</p>
      <p>The OMB definitions for race characterize racial categories
on the basis of their descent from the original peoples of some
geographic region (Table 2). This characterization poses
problems for a realist representation. First, the criterion is
ambiguous insofar as it does not define ‘original peoples’. At
what point in human history are original peoples determined?
Second, the criterion is not applied consistently. ‘American
Indian or Alaska Native’ is defined as a person who has origins
in any of the original peoples of North and South America
(including Central America), and maintains tribal affiliation or
community attachment (emphasis added). This is the only race
category that has the extra requirement of a social relationship,
which renders the categories not exhaustive. For example,
Mexican-Americans who have origins in the original peoples
of South or Central America but do not maintain a tribal
affiliation or community attachment do not fit any of OMB
categories for race.</p>
      <p>However, despite the genealogical criterion in the
definitions of these terms, the OMB guidelines stress
interpreting statements about race as socio-cultural
characteristics that involve ancestry rather than as biological or
genetic characteristics. This connection to ancestry suggests
that the verification criterion for an OMB-based statement
about racial identity is about a historical fact since ancestry is
determined by inter-subjective criteria. However, this contrasts
with additional guidelines for data collection that indicate that
that the verification criteria are the subject’s response to OMB
questions about race.
•
•
•
“Respect for individual dignity should guide the
processes and methods for collecting data on race and
ethnicity; ideally, respondent self-identification should
be facilitated to the greatest extent possible, recognizing
that in some data collection systems observer
identification is more practical.”
“do not establish criteria or qualifications (such as
blood quantum levels) that are to be used in
determining a particular individual's racial or ethnic
classification.” (original emphasis)
“do not tell an individual who he or she is, or specify
how an individual should classify himself or herself.”
(original emphasis) [11].</p>
      <p>Similarly to race, the OMB’s definition of ethnicity also
invokes genealogy. The term ‘Hispanic’ refers to persons who
trace their origin or descent to Mexico, Puerto Rico, Cuba,
Central and South America, and other Spanish cultures.</p>
      <p>However, the same caveats that were discussed for race
apply to ethnicity, namely, 1) ‘ethnicity’ should not to be
interpreted as referring to biological or genetic characteristics,
but rather as referring to ancestry, and 2) the verification
criterion for OMB-based statements about ethnicity is the
subject’s response to OMB-based questions about ethnicity.</p>
      <p>Finally, we should not expect existing data on race and
ethnicity to reflect a consistent, genealogical criterion since
most patients are not presented with definitions of racial and
ethnic terms during the intake process at a clinic or on a survey
and because the language used to describe these categories may
vary at the discretion and preference of the person(s) designing
the form. For example, ‘black’, ‘African American’, and ‘black
or African American’ can all be used to describe the same
racial category.</p>
      <p>OMB DEFINITIONS
A person having origins in any of the original peoples of North and South America (including Central America),
and who maintains tribal affiliation or community attachment.</p>
      <p>A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent
including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands,
Thailand, and Vietnam.</p>
      <p>A person having origins in any of the black racial groups of Africa. Terms such as “Haitian” or “Negro” can be
used in addition to “Black or African American.”
A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.
A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.</p>
      <p>In short, the ontological types of things that a race and
ethnicity datum might be about are heterogeneous, and to make
matters worse, there is often not a single type that is common
to all of them that would provide either necessary or sufficient
conditions. Furthermore, these categories are not historically
stable and stem from contingent circumstances. Even if an
ontologist were confident that there are universals for social
identities, the historical contingency of identity categories
makes ontologically representing these social identities as
stable universals impractical. Nevertheless, ontologists can
provide a realistic representation of how people actually
identify when asked to do so. The lack of inter-subjective
verification criteria for identity statements in tandem with the
stress on self-identification in the instructions provides a
principled basis for representing social identity data differently
from data with an inter-subjective or objective verification
criterion such as birth date and diagnosis.</p>
      <p>InIOnMliRgShEt. of the fact that it is not clear what kinds of things
identities are, OMRSE does not model identities as such.</p>
      <p>However, we do know how identity data are collected and that
their verification criterion involves the process of identifying.</p>
      <p>For this reason, we make the processes of asserting an identity
central to representing social identity data, rather than identities
themselves. An identification process is a planned process that
might utilize a specific vocabulary or common data model,
such as the OMB minimal categories for race and ethnicity.</p>
      <p>However, some identification processes might not use a
common vocabulary or common data elements. For example,
some may only utilize a free text field. Identification processes,
as we represent them here, are planned process that record an
identity statement about an individual person. They should not
be confused with the private and internal mental or emotional
process that involve or give rise to a subject sense of one’s
identity. Identification processes, as we describe them here, are
planned, social, and result in identity data. OMRSE represents
these data as information content entities that are the outputs of
identification processes. Conversely, all identity data are the
specified outputs of an identification processes. Fig. 1
illustrates the representation of identity data and identity
processes in OMRSE.</p>
      <p>
        Subclasses of identification process include racial
identification process, ethnic identification process, and gender
identification process. Identification processes that use a
particular set of terms or coding scheme can be the basis of
further descendent classes of identification process. For
example, OMB racial identification process and PCORnet
racial identification process are subclasses of racial
identification process (Fig. 2). The latter represents racial
identification used in the PCORnet Common Data Model
(CDM), a data standard for representing clinical patient data
from clinical sites across the US for use in the National
PatientCentered Clinical Research Network (PCORnet) [
        <xref ref-type="bibr" rid="ref10">13</xref>
        ].
      </p>
      <p>Table 3 contains definitions related to representing OMB’s
categories related to OMB Asian as an example of how
identities that employ a common data model or common
vocabulary are represented with this approach.</p>
    </sec>
    <sec id="sec-3">
      <title>A. Extended categories</title>
      <p>The OMB guidelines for race and ethnicity allow data
collectors to use a larger number of race and ethnicity
categories as long as they are extensions of and mappable to
the OMB minimum categories, i.e., as long as they do not
introduce new categories but are equivalent or subcategories to
those in the minimal set [10]. In cases where the expanded set
includes subcategories of OMB classes, corresponding identity
data can be introduced as a subclass of the appropriate OMB
datum. For example, Fig. 3 shows CDC Spanish Basque datum
as a
subclass
ooHfrisOpaMniBc RaciDaal&amp;tIduemn&amp;+ty&amp; IdePnRr+oaficccieaasl+s&amp;&amp;on&amp;
Latino
datum.</p>
    </sec>
    <sec id="sec-4">
      <title>B. Inte grati ng</title>
    </sec>
    <sec id="sec-5">
      <title>Hete roge neou s</title>
    </sec>
    <sec id="sec-6">
      <title>Data</title>
      <p>PCORnet&amp;
Racial&amp;
Iden+ty&amp;</p>
      <p>Datum&amp;
PCORnet&amp;Asian&amp;
Iden+ty&amp;Datum&amp;</p>
      <p>OMB&amp;Racial&amp;
Iden+ty&amp;
Datum&amp;
OMB&amp;Asian&amp;
Iden+ty&amp;
Datum&amp;
has&amp;specified&amp;</p>
      <p>&amp;output&amp;
has&amp;specified&amp;&amp;
output&amp;</p>
      <p>OMB&amp;Racial&amp;
Iden+fica+on&amp;</p>
      <p>Process&amp;</p>
      <p>PCORnet&amp;</p>
      <p>Racial&amp;
Iden+fica+on&amp;</p>
      <p>Process&amp;</p>
      <p>Desp
ite the
similar
categori
es and identical definitions, the PCORnet CDM and the OMB
racial categories describe different classes of people. The OMB
guidelines allow people to select more than one race [14].
PCORnet CDM does not. Instead, the PCORnet CDM has a
class for multiple race. Consider a person who identifies as
both Black and Asian according to the OMB definitions.
According the OMB guidelines in which a person can select
more than one race, someone could identify as both Black and
as Asian, and that person would be retrieved by a query for
people who identified as Black, people who identified as
Asian, and people who identified as both. If the same person
were filling out a medical intake form using the PCORnet
CDM guidelines, they would be instructed to choose only one
race. They could, therefore, choose either Black or Asian or
multiple race, but they could not choose both Black and Asian.
With OMB standards, the classes of people who identify as
Black and who identify as Asian can overlap. For the PCORnet
CDM, they are disjoint. Therefore, the class of people who can
identify with OMB Asian is not identical with the class of
people who can identify PCORnet Asian but is actually a
superclass class. It is worth noting that transforming OMB
compliant racial data into the PCORnet CDM results in an
irretrievable loss of information. Namely, persons who have
identified with multiple OMB races will be indicated as
identifying with the semantically less rich category “multiple
races” in the PCORnet CDM. This loss of information is
revealed by accurately representing the semantics of these
coding schemes, but, in such cases of loss of information, not
even a good ontology can not recover information that has not
been stored.</p>
      <p>We developed a strategy for representing social identity
data that supports integrating OMB and PCORnet CMD data.
This strategy is not idiosyncratic to these data models, but is
generalizable. This representation involves articulating the
relations among classes of people who identify with OMB
Asian and those who identify with PCORnet Asian, as an
example. The OMB category Asian means the person has
declared some Asian descent. The PCORnet CDM category
Asian means the person has declared only Asian descent. Fig. 2
illustrates how identification processes and identification data
that result from these two heterogeneous coding schemes are
related. Notice that PCORnet racial identity datum is not a
subclass of OMB racial identity datum. Since the PCORnet
racial identity categories actually have a different meaning
from the OMB racial identity categories, it would be
inappropriate to use subclass relations to connect them. We are
currently considering using SKOS:broader and
SKOS:narrower to describe the relations between the
intentional meanings of the terms, but it is not clear that this
will support data retrieval.</p>
      <sec id="sec-6-1">
        <title>VALIDATION AND RESULTS</title>
        <p>Competency questions are frequently used to validate
modeling decisions in ontologies. They are questions that
reflect the needs of the end user and that the ontology ought to
be able to support. We partially validated the suitability of this
representation for data retrieval and data integration with the
following competency questions below. This validation is only
partial since there are outstanding competency questions that
require additional modelling decisions. We generated an OWL
file with synthetic individuals and constructed Description
Logic queries that answered three out of four of the
competency questions. These queries in Manchester syntax are
listed below. The OWL file with synthetic individuals is
available at https://github.com/ufbmi/socid.</p>
      </sec>
      <sec id="sec-6-2">
        <title>1. Which people are racially identified according to the OMB criteria? as</title>
      </sec>
      <sec id="sec-6-3">
        <title>Asian</title>
        <p>2. Which people are racially identified with multiple
races according to OMB criteria?
inverse 'is about' min 2 'OMB racial identity'
3. Which people are racially identified with more than
one race in either OMB or PCORnet CDM?</p>
        <p>inverse 'is about' min 2 'OMB racial identity' or inverse 'is
about' some 'PCORnet multiple race identity</p>
        <p>4. Which people are racially identified only as Asian
according to OMB or PCORnet criteria?</p>
        <p>Competency Question 4 requires indicating that each of the
OMB race categories are different. For example, we must
decide whether the classes OMB Asian identity datum and
OMB Alaska Native or Native American datum are disjoint.
Adding a disjointness axiom would rule out the possibility of a
single identity datum item that indicates that person has both
identities, but may support this competency question. Future
work will focus on the best way to represent this situation.</p>
        <p>We have included this representation of identity data in
OMRSE, available at www.github.com/ufbmi/omrse.</p>
        <p>VI.</p>
      </sec>
      <sec id="sec-6-4">
        <title>DISCUSSION</title>
        <p>This proposal diverges from traditional realist approaches
insofar as it advocates representing social identities in terms of
their verification criteria rather than according to their
ontological properties. This approach has the advantage of
supporting data integration and retrieval according to realist
principles, without making dubious ontological commitments.
It also does not sacrifice clear semantics, interoperability of
data, or data retrieval. While our competency questions only
address racial identity, they do show that different types of
social identity data that have been gathered according to
different criteria can be adequately represented according to the
general ontological principles described in this paper.
Analogous questions involving ethnicity and gender identity
can be expected to be handled by this approach since they have
the same logical form.</p>
        <p>Future work includes representing relations between types
of identity data to handle the remaining competency question,
developing a set of gender identity terms to include in
OMRSE, and query real patient data to assess the impact of
this representation on cohort discovery tasks that include race
and ethnicity.</p>
        <p>CONCLUSIONS</p>
        <p>Our hypothesis was that representing social identity data
with respect to processes of identifying rather than identities
themselves can support data integration and retrieval in a
realist framework while avoiding controversial ontological
commitments.</p>
        <p>We have produced a BFO-based representation of race and
ethnicity identities and developed strategies for semantically
integrating social identity data that have been collected using a)
the OMB minimal categories for race and ethnicity, b)
extensions of the OMB minimal categories for race and
ethnicity, and c) common data models such as the PCORnet
CDM whose semantics differ from the OMB minimum
categories due to pick one/pick many discrepancies. We have
added this representation to the OMRSE and produced a
synthetic data set in an OWL file to test our competency
questions. Our representation to date handles three out of four
of our competency questions.</p>
      </sec>
      <sec id="sec-6-5">
        <title>ACKNOWLEDGMENTS</title>
        <p>Thanks to William R. Hogan for reviewing and
commenting on the manuscript and to the Clinical and
Translational Science Ontology Group for providing feedback
on a presentation of earlier work at the Charleston, SC meeting
in September 2015.
[10] Revisions to the standards for the classification of federal data on race
and ethnicity, (1997).
[12] Racial and ethnic categories and definitions for NIH diversity programs
and for other reporting purposes, NOT-OD-15-089 (2015).</p>
      </sec>
    </sec>
  </body>
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