Seminars in Oncology Nursing 39 (2023) 151432

Contents lists available at ScienceDirect

Seminars in Oncology Nursing

journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing

Data Science and Precision Oncology Nursing: Creating an Analytic

Ecosystem to Support Personalized Supportive Care across the Trajectory
of Illness
Jessica Keim-Malpassa,b,*, Sherry L. Kauschb,c
a
Associate Professor, Department of Pediatrics, University of Virginia School of Medicine, Charlottesville, Virginia, USA
b
Member, Center for Advanced Medical Analytics, University of Virginia, Charlottesville, Virginia, USA
c
Data scientist, Department of Pediatrics, University of Virginia, Charlottesville, Virginia, USA

A R T I C L E I N F O A B S T R A C T

Key Words: Objectives: The authors’ objective is to present an overarching framework of an analytic ecosystem using
Analytic ecosystem diverse data domains and data science approaches that can be used and implemented across the cancer con-
Big data tinuum. Analytic ecosystems can improve quality practices and offer enhanced anticipatory guidance in the
Data science era of precision oncology nursing.
Diverse data sets
Data Sources: Published scientific articles supporting the development of a novel framework with a case
Precision health
exemplar to provide applied examples of current barriers in data integration and use.
Precision medicine
Precision nursing care Conclusion: The combination of diverse data sets and data science analytic approaches has the potential to
Precision supportive care extend precision oncology nursing research and practice. Integration of this framework can be imple-
mented within a learning health system where models can update as new data become available across
the continuum of the cancer care trajectory. To date, data science approaches have been underused in
extending personalized toxicity assessments, precision supportive care, and enhancing end-of-life care
practices.
Implications for Nursing Practice: Nurses and nurse scientists have a unique role in the convergence of data
science applications to support precision oncology across the trajectory of illness. Nurses also have specific
expertise in supportive care needs that have been dramatically underrepresented in existing data science
approaches thus far. They also have a role in centering the patient and family perspectives and needs as these
frameworks and analytic capabilities evolve.
© 2023 Elsevier Inc. All rights reserved.

Introduction The development and application of precision oncology and per-

Cancer nursing research and practice have been at the forefront of
the precision oncology movement due to the early application of the
precision medicine framework resulting in targeted therapies based
on somatic mutations or other genomic or molecular features of the
diagnosis.1 The evolution of the precision medicine framework then
extended beyond solely omics-based data and targeted therapies to a
broader precision health concept, including personalized clinical
pathways2 and precision survivorship based on emerging late effects
of therapy.3 These applications expanded the understanding of preci-
sion health to include population-based implementation and recog-
nition of the potential exacerbation of health disparities and
emerging ethical considerations.4 8
* Address correspondence to: Jessica Keim-Malpass, PhD, RN, CPNP-AC, FAAN, Asso-
ciate Professor, Pediatric Hematology-Oncology, University of Virginia School of Medi-
cine, P.O. Box 800782, Charlottesville, VA 22908.
E-mail address: jlk2t@virginia.edu (J. Keim-Malpass).
sonalized modeling perspectives rely on large amounts of data (“big
data”) and emerging data science principles. The optimal develop-
ment of precision health or personalized pathways for patients can
only be achieved by aggregating large amounts of data from multi-
ple sources from the patient (including omics, image data, clinical
data often derived from the electronic medical record, health care
utilization data, treatment/medication data, and behavioral, social,
and environmental data) along with evidence generated from clini-
cal trials data and causal pathways gleaned from large, representa-
tive, and well-annotated observational or real-world data.9 There
are numerous challenges associated with combining large and
diverse data entities, including issues of harmonization, privacy
considerations, costs of data storage, etc.4,10,11 Simultaneously,
there are barriers associated with updating these frameworks with
new knowledge (eg, updated treatment recommendations follow-
ing a novel clinical trial or update in clinical guidelines) or updating
algorithms themselves following real-world calibration.

https://doi.org/10.1016/j.soncn.2023.151432
0749-2081/© 2023 Elsevier Inc. All rights reserved.
2 J. Keim-Malpass and S.L. Kausch / Seminars in Oncology Nursing 39 (2023) 151432
In an attempt to be flexible and incorporate data in real-time, ana-
lytic ecosystems offer a framework that nursing science can build
from and apply known evidence or best practices to personal data
trajectories.12 The term analytic ecosystem is an extension of a data
ecosystem where data science capacity is developed through harmo-
nization of data that are findable, accessible, interoperable, reusable
(FAIR).12 16 Analytic ecosystems offer the potential for a usable data
commons with strong data governance and standards to streamline
sharing of data but also sharing of the analytic code along with the
development of reusable data tools and protocols. Central to this pro-
posed framework is the notion of a learning health system or a con-
ceptual approach to capturing data from clinical encounters or health
events, analyze the data to generate new knowledge, then apply this
new knowledge to inform clinical practice in a manner that evokes
continuous learning and feedback loops.17,18 A learning health sys-
tem is viewed as a cyclical process and when combined with analytic
ecosystems implies an active participatory process to the FAIR culti-
vation and direct application of diverse data streams.
Cancer nurses work with patients who receive care in various
venues (outpatient settings, acute and intensive care hospital settings
including the emergency department, acute care ward, intensive care
unit, and home and community-based care). Further, they must
anticipate care needs across the trajectory of their patients’ cancer
experience, from prevention to diagnosis, treatment, survivorship,
and end-of-life care. While the core edict of precision oncology
involves personalized approaches to the right care at the right time
this concept must be extended to provide anticipatory guidance and
support for managing specific toxicities, late effects of treatment, and
symptom clusters.19 There is much use for the intersection of data
science and precision oncology nursing in creating and implementing
analytic ecosystems for optimal patient outcomes. The authors aim to
highlight a precision oncology nursing analytic ecosystem framework
that can be used and implemented across the cancer continuum to
improve quality practices and offer enhanced anticipatory guidance
in the era of precision health. A case exemplar will be used to intro-
duce the key concepts and highlight current barriers to data integra-
tion and why analytic ecosystems embedded within learning health
FIG. 1. Framework for developing an analytic ecosystem across the continuum of cancer care using diverse data sets to support precision oncology nursing care delivery.
systems are needed to revolutionize precision oncology nursing care
delivery.
Components of the Precision Oncology Nursing Analytic
Ecosystem Framework
Diverse Data to Support an Analytic Ecosystem within a Learning Health
System
One of the core components of an analytic ecosystem relies on
combining diverse datasets and translating existing evidence into
these frameworks through algorithms, artificial intelligence, or rein-
forcement learning.20 As the Institute of Medicine report titled “Digi-
tal Infrastructure for the Learning Health System” suggests, digital
health infrastructures (including predictive analytics, risk predic-
tions, and the use of artificial intelligence in health care) will be cen-
tral to the health care of the future and necessary for continued
improvement in patient outcomes.21 By 2020, 90% of clinical deci-
sions were supported by accurate, timely, and up-to-date digital clin-
ical information.21 To facilitate real-time analytics, data need to be
harmonized and collated in an infrastructure that supports large-
scale management and data sharing.22,23 Further, learning health sys-
tem approaches allow for the translation from data to knowledge
and integration of knowledge within the feedback loop.9 Analytic
ecosystems that combine diverse data within learning health systems
allow for data to be updated within the patients’ own trajectory of ill-
ness but also for new treatment specific data to translate to evidence
integration (Fig. 1).
Precision Oncology Nursing across the Cancer Continuum
There are numerous opportunities to integrate the full breadth of
patient, clinician, and system data to support precision oncology
nursing needs. Table 1 highlights different diverse data needs across
the continuum of care. Data science approaches have begun to
address multiple domains through elements such as multi-modal
data streams supporting algorithmic development24 or models that
 J. Keim-Malpass and S.L. Kausch / Seminars in Oncology Nursing 39 (2023) 151432 3

TABLE 1 receiving her planned chemotherapy, she exhibited clinical signs and
Opportunities for Diverse Data Supporting Precision Oncology Nursing across the symptoms concerning for sepsis, including worsening cardiorespira-
Continuum of Cancer Care. tory status changes in level of consciousness, and was admitted to
Domain across the Data needs and interactions the pediatric intensive care unit (PICU) for monitoring and treatment.
continuum of care After being admitted to the PICU, there were three distinct instances
Physiological and social Patient characteristics (age, race, ethnicity, sex)
where either original antimicrobial therapy was not sufficient, or she
conditions Social conditions (economic, health literacy, presented with a new infectious source. While she was in the PICU
geography) she was treated with several antimicrobials, her blood pressure had
Biomarkers (omics, pharmacogenomics, networked to be maintained with vasopressors, and she had to be intubated for
interactions of physiological data, other physio-
a short period of time to support her recovery. She had a very pro-
markers)
Tumor heterogeneity longed PICU stay and unfortunately her scheduled chemotherapy
Treatment and medications was dramatically delayed. She was transferred from the PICU to the
Comorbidity acute care wards on day 20 of her stay in a very deconditioned state
Treatment pathways Models of care (Fig. 2).
and evidence from Clinical guideline-based recommendations
Even though patient 3’s primary oncology team is at the same
clinical trials Resource allocation
Impact on clinicians institution she was admitted to the PICU there is currently no stan-
Patient preferences dard process to update complications in care (ie, extended PICU stay,
Adherence to regimen vasopressor treatment, antimicrobial therapies, days intubated, pre-
Cumulative therapy received
dictive analytic derived severity of illness trajectories) that would
Polypharmacy/cumulative drug exposure
Patient health care utilization support her overall precision surveillance and survivorship care
Sequence of treatment/timing of treatment needs. Patient 3 was receiving state-of-the-art care while in the PICU,
Transition to end-of-life care pathways and we have data on her overall risk of illness every 15 minutes, but
Monitoring and Toxicities and adverse events once she leaves the PICU, these data are not meaningfully recorded
surveillance Symptom clusters
or analyzed for the association with long-term outcomes. Current
Ongoing functional status and health related quality
of life documentation practices of her PICU stay include a narrative over-
Screening for recurrence/progression view captured in clinical notes, but it is not systematically recorded
Personalized supportive care/palliative care regimens anywhere for future research or clinical use.
Survivorship and health Screening for secondary malignancies
We know that children who have had extended courses of illness
maintenance Late effects of treatment
Financial toxicity
and invasive therapies such as mechanical ventilation in the PICU
Mental health impacts are at risk for long-term morbidity and limitations in functional
Caregiver impacts status.25,26 We also know that they require intensive rehabilitation
Family management as well as psychosocial care due to traumatic care experiences in the
PICU.26,27 Further, we know that their caregivers are also at risk for
issues such as anxiety, depression, and poor health for themselves
following prolonged pediatric illnesses.28,29 Finally, we know that
incorporate domain fusion (ie, predictive models that incorporate
the patient’s chemotherapy was delayed while she was in the PICU,
domain 1 [omic data] with domain 2 [social characteristics] into one
and these are critical data to capture systematically because we
unified model output).4
know that timing and cumulative dosing are directly related to risk
of relapse.30 These data about her critical illness trajectory are criti-
Case Exemplar cal to her oncology team in tailoring and personalizing her monitor-
ing and surveillance intervals along with updating her long-term
Incorporating Knowledge about the Intensive Care Unit Trajectory into survivorship care plan. It also could be useful to researchers for
Overall Cancer Treatment Plan for Enhanced Monitoring/Surveillance understanding how trajectories of sepsis differ for neutropenic
and Survivorship Planning patients in the PICU. This case highlights how even when we have
access to highly dimensional data, we often operate in silos without
Patient 3 is a 10-year-old child with high-risk acute lymphoblastic taking a personalized and patient-centered analytic approach with
leukemia who was in the induction phase of her treatment and was data integration and continual updating within complex learning
severely neutropenic. While she was a patient in the acute care ward health systems.

Fig. 2. Use of an artificial intelligence illness-derived illness score to understand the patient’s overall illness severity while she was admitted in the pediatric intensive care unit
(PICU). Black lines represent three sepsis events.
4 J. Keim-Malpass and S.L. Kausch / Seminars in Oncology Nursing 39 (2023) 151432
Conclusion
Despite the immense promise of precision oncology, the adoption
into routine clinical oncology care workflows has been slow and vari-
able.31 One of the reasons is based on the limited actionability of
some omics-based data. Other reasons involve the variability of how
different environments even within the same health system opera-
tionalize data aggregation. Still, other barriers exist in the recognition
of algorithms and data science applications fostering bias and dispar-
ities in the health care system.32 34 In the case exemplar, we noticed
how even when patient 3 had access to artificial intelligence based
predictive analytics while she was admitted to the PICU, data streams
often exist in silos without meaningful integration for clinical care or
research.
Oncology nurses and nurse scientists sit at a unique intersection
between clinical care delivery and data science supported precision
oncology approaches that can benefit patients across the continuum
of care. They inherently recognize the need for patient- and family-
centered data integration and use. Oncology nurses and nurse scien-
tists also have a long-standing expertise in supportive care and
enhanced symptom management. New approaches in networked
models offer approaches to extend our understanding of symptom
clusters and associated outcomes.35,36 An underused area of study is
at the intersection of precision oncology and anticipatory guidance in
terms of personalized supportive care needs. Data science approaches
allow for prognostic enrichment and personalized prediction of toxic-
ities that could dramatically extend current approaches to further tai-
lor symptom management strategies. There has also been a dearth of
literature supporting the integration of data science within end-of-
life care trajectories, and there are unique opportunities in facilitating
enhanced anticipatory guidance for patients and families.
The combination of diverse data sets and data science analytic
approaches has the potential to extend precision oncology nursing
research and practice. Integration of this framework can be imple-
mented within a learning health system where models can update as
new data become available. Nurse scientists can center patient- and
family-centered perspectives and increase data literacy and usability
of these models by both clinicians and patients/families.37 Further,
oncology nurses and nurse scientists have the opportunity for
domain expertise in the continuum of care and informing how differ-
ent care processes can be incorporated into this model.
Declaration of Competing Interest
JKM has equity in Artera, an artificial intelligence-based bio-
marker company (none of the products are discussed in this article).
SK has no financial interests to disclose.
Funding
Jessica Keim-Malpass is supported by AHRQ R01HS028803.
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