Comprehensive COVID-19 understanding is a critical asset for adapting to pandemic needs, directing resources, developing vaccines, and planning for surges in a timely, informed manner. Because common barriers have impeded the progress of comprehensive data repositories, researchers have relied on surveillance data from population-level viral testing, which has proven insufficient. To significantly advance COVID-19 understanding, the medical community needs a digital patient registry that captures national-level data on how the virus impacts individuals differently according to comorbidities, lifestyle factors, and more. These essential insights lie in real-world evidence, which a registry can only deliver when it applies value sets to leverage clinical and claims data from health systems across the United States.

1. The Fight Against COVID-19:
A National Patient Registry

2. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Fight Against COVID-19
Population-level viral testing for
COVID-19 hasn’t produced the
necessary level of surveillance data
to inform efforts to contain the virus.

3. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Fight Against COVID-19
The most significant challenges for
building a digital national patient
registry of COVID-19 patients range
from variations in testing protocols,
disparate and insufficient testing
facilities, and differences in treatment
strategies to data interoperability
issues with multiple vendors, a lack
of a singular data platform, data
access and rights, and variations in
local and state public health
strategies, including surveillance.

4. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Fight Against COVID-19
To understand the virus comprehensively—
how it impacts individuals differently
according to comorbidities, lifestyle factors,
and more—researchers need real-world
evidence (RWE) for COVID-19 at an
unprecedented speed.
Digital national-level real-world data (RWD)
registries represent an emerging solution
for COVID-19 RWE and, therefore, a better
understanding of the outbreak.

5. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A Standardized, Comprehensive National Patient Registry
to Meet the Urgent Need for COVID-19 Understanding
Soon, medical researchers will need COVID-19
RWE to understand the safety and efficacy of
vaccines.
For the newly approved vaccines that will
run on expedited timelines, there will be
insufficient or no data for children, older adults,
adolescents, and underrepresented minorities.
The clinicians, medical researchers, and
policymakers will need ongoing data from the
real-world setting to understand this disease,
which affects the vast majority of the world.

6. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A Standardized, Comprehensive National Patient Registry
to Meet the Urgent Need for COVID-19 Understanding
The clinical and scientific community,
along with policymakers, use the MVDS
to build registries and leverage testing,
clinical, and claims data from health
systems across the United States,
creating cohorts for confirmed and
suspected COVID-19 patients.

7. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A Standardized, Comprehensive National Patient Registry
to Meet the Urgent Need for COVID-19 Understanding
No singular national authority sets MVDS
requirements for COVID-19.
As a result, several registries have
emerged that lack standardization and
cover limited breadth and depth of the
data necessary to answer critical
questions about COVID-19 for the medical
research community and policymakers.

8. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Case for a National Patient Registry:
Top Challenges of a COVID-19
These insufficient existing COVID-19
registries are confronting the global
pandemic’s pressure on the worldwide
community the think holistically about the
healthcare and life sciences ecosystem
and the collection and use the data to
support various use cases.
Hospitals serving COVID-19 patients, as
well as medical researchers and
pharmaceutical companies, face the
following challenges responding to the
outbreak:

9. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Case for a National Patient Registry:
Top Challenges of a COVID-19
• Understanding natural history and
evolution of the disease.
• Meeting testing needs.
• Assessing effectiveness and outcomes
associated with various preventative
and treatment modalities.
• Administering the vaccine and
prioritizing patient populations for
vaccination.
• Establishing vaccination rates.
• Monitoring vaccine safety and efficacy.
• Understanding the impact of COVID-19
on other treatment modalities for various
comorbidities and diseases.
• Maintaining or expanding their facilities’
capacity to treat patients with COVID-19
and returning to pre-COVID-19 patient
volumes and care processes (e.g.,
elective surgeries and clinical trials).
• Assistance related to personal
protective equipment, testing, and
staffing.
• Meeting supply and durable equipment
needs.
• Meeting financial concerns.

10. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Case for a National Patient Registry:
Top Challenges of a COVID-19
With the pandemic driving the above challenges
and an urgent need for collaboration and new
actionable data, as well as understanding what
post-pandemic healthcare and life would look
like, digital registries are well-positioned to
support aggregated, RWD collection.

11. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
The Case for a National Patient Registry:
Top Challenges of a COVID-19
Until medical researchers publish the results
of COVID-19-related randomized control trials
and healthcare eradicates COVID-19 or has
scientifically proven treatment options.
With the FDA’s support of patient-generated
RWD and RWE, healthcare and life sciences
organizations must leverage the data available
through disparate data sources including
EHRs and claims to improve decision making
around COVID-19 in clinical, research, and
policy settings.

12. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
The pandemic has necessitated
expanded uses of RWE to support
regulatory decisions.
By conducting RWE studies that apply
the appropriate scientific standards to
the COVID-19 registry and following
use cases, life sciences can support
public health and policymaking by
ensuring the safety and efficacy of
interventions—for COVID-19 and
beyond.

13. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
• Designing and improving clinical care
pathways and guidelines.
• Informing medical research for
diagnostic, therapeutic, and vaccine
development.
• Triaging patients for testing.
• Effectiveness of screening and testing.
• Patient and healthcare provider
surveillance.
• Understanding the performance of
diagnostics in real-world settings.
• Efficacy and safety of therapeutics.
• Addressing health disparities.
• Vaccination.
• Impact on other diseases.
• Long-term outcomes of the patients
who contracted mild COVID-19 versus
those who contracted moderate to
severe disease.
• Vaccination rates, as well as efficacy
and safety.

14. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
An MVDS approach fills in the information gaps
by leveraging clinical and claims data from
health systems across the United States,
powering a dynamic multipurpose COVID-19
national patient registry and RWE related to
COVID-19.
One such registry solution from Health Catalyst,
the Touchstone® COVID-19 Registry and
Insights (Figure 1), aims to provide a template
for other broader national registries for COVID-
19 and beyond.

15. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
Figure 1: The Touchstone COVID-19 Registry and Insights.

16. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
A national-level registry effectively
assembles critical data in a standardized
manner, giving healthcare and life
sciences organizations a documented,
reproducible solution to the pandemic
data scarcity and quality challenges.

17. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
Concepts added in this registry can serve
as an MVDS enables the exchange of
essential data and improves the quality of
data collected, which is vital as disparate
sources and organizations collect the data.
Also, users can configure their EHRs and
other front-end data capture systems to
manage MVDS, making it an accessible
tool for many organizations.

18. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
By leveraging Health Catalyst COVID-19
national patent registry to identify key
characteristics of interest that define
COVID-19 patients, it is easier to track
trends over time as patients progress
from suspected to confirmed diagnoses.

19. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
A National COVID-19 Registry Bridges Critical
Information Gaps with Real-World Evidence
Tracking serves several benefits,
including assisting with triaging of patients
to perform appropriate billing of ICD-10
codes and predicting and triaging patients
with COVID-19 signs and symptoms
who are more likely to test positive.
Meanwhile, the documentation and
coding standards for COVID-19
suspected and confirmed cases are
evolving, and further assessments
and studies will help fully leverage
the registry in COVID-19 efforts.

20. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
COVID-19 National Registry Essentials: Patient
Cohorts and Lab Test Knowledge Curation
The digital COVID-19 registry allows
for two essential capabilities to further
understand the virus: defining patient
cohorts and lab test knowledge
curation (Figure 2).

21. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Figure 2: Defining patient cohorts and lab test knowledge curation.

22. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Patient Cohorts
Based on guidance from national and global
agencies, including the Centers for Disease
Control and Prevention, World Health
Organization, and others, proposed value sets
must include two patient cohorts for the registry—
confirmed and suspected COVID-19 patients.
The guidelines further stratify the cohorts into
three levels of confidence (Figure 3):
1. High confidence suspected.
2. Moderate confidence suspected.
3. Low confidence suspected.

23. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Patient Cohorts
Figure 3: Proposed COVID-19 registry value sets

24. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Patient Cohorts
The patient cohorts for the registry
defined using the value sets above allow
the study of patient care outcomes.
Examples of outcomes of interest in
COVID-19 patients include the
following measures:
ICU admission.
Ventilator status.
An extracorporeal membrane
oxygenation requirement.
Mortality.
>
>
>
>

25. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
Due in part to the critical diagnostic importance
of lab testing, lab test result data is vital to
understanding patients’ clinical state and
surveillance of patient populations.
However, it has been extremely challenging
for the clinical, research, and public health
communities to get lab data from hospital and
reference labs with consistent LOINC codes
and manufacture information.

26. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
EHR systems often store lab data with local
codes for test types and result values rather
than codes from widely standardized
terminologies (e.g., LOINC (Logical
Observation Identifiers Names and Codes)).
In such cases, researchers need to ascertain
the types of lab tests and the meanings of
the result values automatically over a large
volume of lab result data—without the benefit
of a uniform standard lab terminology across
the various EHR systems the proved the lab
result data.

27. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
In the Health Catalyst national-level
COVID-19 registry, a lab test knowledge
curation workflow provides a knowledge
base for recognizing lab test types and
understanding lab result values, as
expressed in the lab result data records
from multiple EHRs (Figure 4).

28. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
Clinical Data Warehouse Team Informatics Architect Knowledge Curator
Search for SARS-CoV-2
lab data
Compile list of lb
record types
Classify categorized
results
Verify automated
categorization
Load new lab data into
data warehouse
Run automated lab result
categorization algorithm
Update lab knowledge base
Update categorization
algorithm
Figure 4: Laboratory test knowledge curation workflow.

29. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
The lab test knowledgebase, accumulated
from many lab result records across multiple
EHRs, allows for automated categorization of
lab results (e.g., positive, negative, pending,
ambiguous, test problem, unmapped) and
lab test types (e.g., detection of COVID-19
material or a COVID-19 antibody).
This classification system identifies patterns
of interest; for example, it classifies the data
of patients who are confirmed or suspected
COVID-19 cases.

30. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
The harmonized set of lab result values
allows for the following:
Rapid automated use of readily
comprehensible data (e.g., positive
and negative result values).
Identification of results that may be
usable with additional data curation
(e.g., unmapped).
The ability to select for patients whose
tests may still be in process or
unavailable (e.g., “pending”).
>
>
>

31. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
Manufacturer information integrated with lab
test orders, results, and clinical data can help
assess various COVID-19 diagnostic tests’
performance.
An EHR, Lab Information System, and the
instrument collect several data points.
No system captures the full picture, as
different providers and systems are involved.
There are interoperability challenges and a
lack of recommended MVDS to enable
standardized data collection and curation
efforts to support RWE.

32. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Lab Test Knowledge Curation
To address this industry-wide challenge,
Health Catalyst is actively addressing this
problem in a collaborative approach with
health systems and diagnostic labs to add the
data elements of interest from unstructured
and structured data in EHRs and Laboratory
Information Management Systems.
This will enable RWD in the COVID-19
registry to understand the performance
and the limitation of testing and understand
better how to use data for RWE.

33. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Optimizing the COVID-19 National Patient Registry
While the COVID-19 registry holds promise
in better disease understanding and
management, optimizing it requires more
work with healthcare and life sciences
organizations of every size to help their
analytics and informatics team develop
a registry.

34. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Optimizing the COVID-19 National Patient Registry
The participation of EHR vendors is also
crucial to ensure they can leverage their
partnerships with hospitals for maximal
data collection.
Additionally, federal government oversight
and leadership by coordinating with local
health authorities would coordinate the
collection of adequate data to direct
current and future decision making to
control this pandemic and prevent
subsequent outbreaks.

35. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Optimizing the COVID-19 National Patient Registry
To generate evidence and insights from this
registry and other data sets at a national
scale, the Health Catalyst Life Sciences
division is participating in the COVID-19
Evidence Accelerator launched by the
Friends of Cancer Research and the
Reagan-Udall Foundation for the FDA.
Health Catalyst has shared experience with
the COVID-19 national patient registry with
the Reagan-Udall accelerator to inform the
key data elements needed to support RWE
generation for COVID-19.

36. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Optimizing the COVID-19 National Patient Registry
Understanding the importance of
partnerships with several national and
local authorities, Health Catalyst
collaborated with the MITRE Corporation
to convene the COVID-19 Healthcare
Coalition.
This group of EHR companies, non-
profits, analytics companies, healthcare
organizations, and academic community
members contributes knowledge to solve
public health questions related to
COVID-19.

37. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
An MVDS-Driven COVID-19 Registry Is a
Critical Tool in a Rapidly Changing Landscape
As a dynamic and scalable approach,
leveraging EHR data with MVDS can
accommodate the rapidly changing
COVID-19 landscape and fill in critical
gaps of population-level viral testing.
Aggregated outbreak information from
health systems across the United States
will give researchers and providers the
comprehensive understanding they need
to adapt to pandemic demands, direct
resources, and plan for surges in a
timely, informed manner.

38. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
An MVDS-Driven COVID-19 Registry Is a
Critical Tool in a Rapidly Changing Landscape
The Touchstone COVID-19 Registry
and Insights work represent a historic
collaboration between EHR and
analytics vendors.
The complete study is available on
the COVID-19 Healthcare Coalition’s
website, courtesy of MITRE.

39. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
For more information:
“This book is a fantastic piece of work”
– Robert Lindeman MD, FAAP, Chief Physician Quality Officer

40. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
More about this topic
Link to original article for a more in-depth discussion.
The Fight Against COVID-19: A National Patient Registry
Health Catalyst Launches COVID-19 Patient Data Repository to Speed Vaccine Development
Sadiqa Mahmood, DDS, MPH, General Manager & Senior VP, Life Sciences Business
Using COVID-19 Value Sets for Patient Identification
Sadiqa Mahmood, DDS, MPH, General Manager & Senior VP, Life Sciences Business
A Sustainable Healthcare Emergency Management Framework: COVID-19 and Beyond
Holly Rimmasch, Chief Clinical Officer; Ed Corbett, MD, Medical Officer;
Anne Marie Bickmore, Senior VP, Company Operation
Healthcare Trends During COVID-19: Top Five Areas to Watch
Holly Rimmasch, Chief Clinical Officer; Ed Corbett, MD, Medical Officer;
How Data Transforms the Hospital Command Center to Pandemic Proportions
David Grauer, MBA, MHSA, Senior VP Professional Services
David Gardiner, MBA, MHA, MPH, Senior VP and Executive Advisor

41. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Sadiqa Mahmood, DDS, MPH is the Senior Vice President and General Manager of the
Life Sciences business at Health Catalyst and contributes to the overall vision and
growth for the company. Sadiqa’s work focuses on identifying and addressing areas of
high unmet need for therapeutic development through application of real-world data.
She is an advisor to several healthcare organizations and global policy makers. Sadiqa
is a dental surgeon and holds a master’s degree in public health from the Harvard
School of Public Health. Passionate about improving access to care and patient
outcomes by leveraging data and healthcare ecosystem, Sadiqa has spent her career at the
intersection of medicine, policy, technology, and analytics. Previously she led clinical analytics, quality
and safety, value-based contracting, and population health across healthcare organizations, including
the Dana-Farber Cancer Institute, Partners HealthCare System, and Boston Medical Center. Sadiqa
has been an advocate of collaborative learning system in healthcare and has steered cross-industry
multi-stakeholder national and global collaborations to drive healthcare innovation. She joined Health
Catalyst in 2019 as SVP of Medical Affairs. Sadiqa has lived and worked in Asia and UK in addition to
the US. She is based in Boston, Massachusetts. Outside of work, she is a Formula 1 fan and race as a
member of a local team.
Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com
Sadiqa Mahmood, DDS, MPH

42. © 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com
Health Catalyst is a mission-driven data warehousing, analytics and outcomes-improvement
company that helps healthcare organizations of all sizes improve clinical, financial, and operational
outcomes needed to improve population health and accountable care. Our proven enterprise data
warehouse (EDW) and analytics platform helps improve quality, add efficiency and lower costs in
support of more than 65 million patients for organizations ranging from the largest US health system
to forward-thinking physician practices.
Health Catalyst was recently named as the leader in the enterprise healthcare BI market in
improvement by KLAS, and has received numerous best-place-to work awards including Modern
Healthcare in 2013, 2014, and 2015, as well as other recognitions such as “Best Place to work for
Millenials, and a “Best Perks for Women.”