UNIT 5

CLINICAL DATA REPOSITORIES

(5 Hours)

INTRODUCTION

A clinical data repository collects data such as demographics, laboratory

results, radiology images, admissions, transfers, and diagnoses from various clinical
sources like electronic medical record or a laboratory system that provide a full picture of
the care a patient has received. It plays an important role in clinical data using, including
healthcare service, because it shows a patient’s clinical data intended to support multiple
uses. Clinical data repository collects manage, and store data sets for data analysis,
reporting and exchange that facilitates sharing of this data to and among treating
professionals.

Despite the advent of data repositories, portal system, and the steady increment in
the sharing of information from clinical sources, the role of this information system shows
up to be generally constrained. This unit provides information on clinical data repositories
including the benefits and limitations, types, and its integration with the hospital information
system. The last portion of this chapter will present a brief discussion of data warehouse.

LEARNING OUTCOMES
At the end of this unit, students will be able to:
✓ Differentiate clinical data repository and data warehouse
✓ Identify the different types of clinical data repositories
✓ Explain the advantages of having multiple views for patient medical record
✓ Discuss the importance of clinical data visualization

TOPIC 1: BASIC CONCEPTS OF CLINICAL DATA REPOSITORY

Learning Objectives

At the end of this topic, the students will be able to:

✓ Describe clinical data repository
✓ Identify the types and traits of clinical data repository
✓ Explain the importance of clinical data repository integration with hospital
information system

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 Generally speaking, healthcare data is too complicated, flexible and changeable
to capture a consistent, accurate and reliable information scheme which is the basis of
architecture-based data as a whole. Since electronic healthcare records are commonly
adopted in hospitals, the increase in clinical data provides tremendous opportunities for
secondary use.

With the advancement of health information technology and development of

clinical knowledge, more and more requirements are emerging. To address these
requirements health care organizations have installed Clinical Data Repositories for
specific purposes.

Clinical Data Repository (CDR) is a systematically structured and gathered

“storehouse” of patient -specific data, which is usually mirrored from a clinical application,
or supplemented with data from other clinical systems. It collects comprehensive data on
large patient cohorts, assembled and stored over time, which not only permit these
institutions to examine trends in utilization and outcomes, but also to perform
sophisticated quality assurance and medical management queries independent from the
systems that collect the data (e.g. LIS, RIS, PIS).

This is an aggregated database functions to hold clinical data such as laboratory

results, diagnostic reports, and various clinical documentation
This centralized database can also collect and store administrative and clinical data from
heterogeneous data sources (primary electronic sources) and open access to users.
CDR contains detailed patient-centered information, updated in a real-time environment
and organized to support quick retrieval and facilitate arbitrary querying of the data and
analyses for reporting and research.

Over time, the CDR displays the longitudinal medical record of a patient across
various participating organizations. The common kinds of available information include:

▪ Patient Demographics ▪ Immunizations

▪ Patient’s primary health provider ▪ Diagnoses
▪ Medication list ▪ Procedures
▪ Allergies ▪ Laboratory results
▪ Hospital in-patient visits ▪ Social history
▪ Emergency department encounters ▪ Vitals
▪ Outpatient practice visits

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 Source: https://bit.ly/3cx0qHE

The advantages and limitations of using Clinical Data Repositories are

summarized in the table below:

ADVANTAGES LIMITATIONS
✓ Aids in decision analysis ▪ Only integrated with clinical data
✓ Avoids computational loading ▪ Don’t offer flexible analytics for
✓ Improved response time to a query analysts to use
✓ Real time-time retrieval of clinical ▪ Don’t have the ability to integrate
data with other non-clinical source
✓ Provide longitudinal views of systems
patient information enhance the ▪ Can’t provide a true picture of the
patient experience cost per case for each patient
✓ Avoid duplications in testing and ▪ Can’t show patient satisfaction
redundancies in care scores

Data repositories differ in their levels of integration that depends on locations,

indices, catalogs, semantic translations or equivalences, consistent syntactic structures
and links to external information. The level of data repository integration affects its
usefulness by restricting how readily a comprehensive global query can be made for any
sub-set of its contents. Integration structure from the CDR to the LIS may be different for
radiology, pharmacy or other hospital departments. Users can only access certain types
of information and, depending on the limitation, use different types of queries from a
specified information system. Query integration within an electronic health record (EHR)
providers and care team members can search the CDR for information about their
patients.

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 Question#1. Read the journal “The clinical data repository: a challenge to medical
student education” by Altman M. (2007). How can changes in the health care environment like
medical informatics and clinical data repository affect you as a Public health student?

There are different types of clinical data repository based on the purpose, origin,
control and integration of their data. These include study, EHR, registry, warehouse,
collection and federation. Brief descriptions of these types are summarized below.

Source: Traits and types of health data repositories (Wade T. D., 2014)

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 Question#2. Read the journal “Traits and types of health data repositories” by
Wade T. D. (2014). Using a table, list the data repository traits that are relevant to data reuse
and describe each trait.
REPOSITORY DESCRIPTION
TRAIT

Although a comprehensive record of patient information is needed, it is not always

easy for clinicians to extract information from the records. Although clinicians need
access to the entire patient record, they often seek answers to specific questions and
want to specific data subsets. CDR provides data standardization from disparate sources
into a cohesive format. The structure allows data to be extracted along dimensions such
as time (by year, month, week, or day), location, or diagnosis. It also transforms large
amounts of information from distinct transactional files into a unitary decision-support
database. CDR function to provide longitudinal views of patient information. Clinicians
may access a variety of patient-focused information through a consistent and easy-to-
use graphical interface (GUI). Lastly, CDR provides cross-continuum view of information
(ambulatory-focused information).

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 CDR allows data visualization of laboratory results and vitals. Data Visualization
is an art of representing data in a pictorial or graphical format. Data visualization can aid
inpatient care by reducing the time needed to interpret and understand the clinical data.
This is used to simplifying a wide array of information, and it allows decision-makers to
derive analytical results from information presented visually, supporting clinicians to
understand EHR data in a visual way and correlations, patters, trends can be revealed
and recognized. The following is an example of data presentation seen in a CDR.

Sample Blood Sugar Level Chart

Source: HEALTH INFORMATION SYSTEM for MEDICAL LABORATORY SCIENCE (Ebuen, B. U. et. al., 2019)

Question#3. Get a sample clinical laboratory report and write a brief narrative on
the result of the laboratory service highlighting significant diagrams based on the results.

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 Today's health care facilities face exponential growth in patient information and
images from all clinical units. Healthcare providers are under growing pressure to take
full advantage of these data in order to optimize decisions on patient care. As clinical
understanding continues to grow, health information systems specifications are evolving.
As a result, CDR has to faced challenges of adaptability and flexibility.

TOPIC 2: CLINICAL DATA WAREHOUSES

Learning Objectives
At the end of this topic, the students will be able to:
✓ Discuss the basic concepts of clinical data warehouse
✓ Explain the differences between clinical data repository and data warehouse

The confusion between clinical data repositories mentioned above and data
warehouse is quite frequent. Well, the two concepts are similar, but they are not identical.
In this this section we will be discussing later. Clinical data warehouse or data warehouse
is repositories of information from clinical, and sometimes research, records from a single
organization, such as a care provider or a payer designed for query and analysis rather
than for transaction processing This serves as storage for retrospective analysis and
reporting of aggregate views of the clinical, operational, and financial performance of the
enterprise. It contains a subset of the clinical data as well as the operational and financial
data of the enterprise and is focused primarily on administrative, managerial, and
executive decision-making.
Unlike, CDR, data warehouse has a high level of integration to allow very flexible
queries of its content. It has the ability to de-identify queried data, or to allow query for
frequencies of records and enables data access by having data at one place from several
sources, linked together, and easily searchable. A data warehouse is designed by
integrating data from multiple heterogeneous sources, shown in the figure below, which
support analytical reporting, structured and/or ad hoc queries, and decision-making. Data
management includes data maintenance, data integration, and data consolidation. It
includes an extraction, transportation, transformation, and loading (ETL) solution, an
online analytical processing (OLAP) engine, client analysis tools, and other applications
that manage the process of gathering data and delivering it to business users.

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 Data Warehouse Basic Architecture
Source: https://docs.oracle.com/cd/B10500_01/server.920/a96520/concept.htm

The table below compares clinical data repositories from data warehouse.

CLINICAL DATA REPOSITORIES DATA WAREHOUSES

Detail-oriented-focused on the individual Aggregated data summarized to decision-
patient making level(s); example: executive
information system or key performance
indicator report card
Users can read and write to the database Nonvolatile-read only access to data
Real-time updates from operational Updated periodically (static) by operational
systems systems

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 Normalized data; no redundant data Denormalized data is often included;
redundancy of data
Integrates clinical data Integrates operational, clinical, and financial
data
Stores data in its most current updated Time variant-stores data and time, dates;
form allows trending
Data is fed from clinical systems Data is fed from clinical, financial, and
administrative systems
Source: © FCG 1998

Data Warehouse architecture is generally based on a Relational Database System

Management Server which functions as the central repository for information data. This
central repository of information is surrounded by several key components designed to
make the entire environment usable, manageable, and available by both the operating
systems that bring data into the warehouse and the end-users query and analysis tools.
Therefore, the application of clinical data warehouse can be efficient in producing
valuable information on patient care aspects to promote budgeting, planning, testing,
process development, public monitoring, benchmarking, and trend analysis, as well as in
facilitating the decisions required to avoid the disease's occurrence or emergence
associated with preserving population health.

Question#4. Answer the questions below based on your current understanding

on data warehouse.

What are the important elements of clinical data warehouses?

What are the similarities between clinical data repositories and clinical data warehouse?

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SUMMARY

▪ A clinical data repository (CDR) collects, assembles and stores data from different
clinical sources over time. It permits health care professionals to examine trends
in utilization and outcomes and also perform sophisticated quality assurance and
medical management queries independent from the systems that collect the data.
▪ Integration structure may be different for laboratory, radiology and pharmacy
department.
▪ There are six different types of CDR which include study, HER, registry,
warehouse, collection and federation.
▪ In contrast to CDR, clinical data warehouse is subset of the clinical data that is
focused primarily on administrative, managerial, and executive decision-making.

REFERENCES

1. Calano, R. B. and Del Rio, F. R. (2017). HEALTH INFORMATICS (An Illustrative

Approach). First Edition). APD EDUCATIONAL PUBLISHING HOUSE, Malabon.
2. Ebuen, B. U. et. al. (2019). HEALTH INFORMATION SYSTEM for MEDICAL
LABORATORY SCIENCE. C & E Publishing, Inc. Quezon City.
3. Wade T. D. (2014). Traits and types of health data repositories. Health information
science and systems, 2, 4. https://doi.org/10.1186/2047-2501-2-4. Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340801/
4. Min L, Liu J, Lu X, Duan H, Qiao Q. An Implementation of Clinical Data Repository
with openEHR Approach: From Data Modeling to Architecture. Stud Health
Technol Inform. 2016;227:100–105. Retrieved from
https://pubmed.ncbi.nlm.nih.gov/27440296/
5. Campbell, T. (2014). Clinical Data Repository Versus a Data Warehouse — Which
Do You Need? Enterprise Data Warehouse / Data Operating system. Health
Catalyst. Retrieved from https://www.healthcatalyst.com/insights/clinical-data-
repository-data-warehouse
6. Min, Lingtong & Liu, Juanjian & Lu, Xudong & Duan, Huilong & Qiao, Qingzhi.
(2016). An Implementation of Clinical Data Repository with openEHR Approach:
From Data Modeling to Architecture. Studies in health technology and informatics.
227. 100-5. Retrieved from
https://www.researchgate.net/publication/323104629_An_Implementation_of_Cli
nical_Data_Repository_with_openEHR_Approach_From_Data_Modeling_to_Arc
hitecture/citation/download
7. Altman M. (2007). The clinical data repository: a challenge to medical student
education. Journal of the American Medical Informatics Association : JAMIA,
14(6), 697–699. https://doi.org/10.1197/jamia.M2483 . Retrieved from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213489/

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