Envisioning a Learning Health Care System:

The Electronic Primary Care Research

Network, A Case Study
Brendan C. Delaney, MD, FRCP, ABSTRACT
MRCGP1 PURPOSE The learning health care system refers to the cycle of turning health
Kevin A. Peterson, MD, MPH2 care data into knowledge, translating that knowledge into practice, and creating
new data by means of advanced information technology. The electronic Primary
Stuart Speedie, PhD, MED3 Care Research Network (ePCRN) was a project, funded by the US National Insti-
Adel Taweel, PhD1,4 tutes of Health, with the aim to facilitate clinical research using primary care
electronic health records (EHRs).
Theodoros N. Arvanitis, PhD5
F. D. Richard Hobbs, FRCGP6 METHODS We identified the requirements necessary to deliver clinical studies
1
via a distributed electronic network linked to EHRs. After we explored a variety
Department of Primary Care and Public
of informatics solutions, we constructed a functional prototype of the software.
Health Sciences, King’s College, London,
We then explored the barriers to adoption of the prototype software within US
UK
practice-based research networks.
2
Department of Family Medicine and Com-
munity Health, University of Minnesota RESULTS We developed a system to assist in the identification of eligible cohorts
Medical School, Saint Paul, Minnesota from EHR data. To preserve privacy, counts and flagging were performed
3 remotely, and no data were transferred out of the EHR. A lack of batch export
Department of Health Informatics, The
University of Minnesota, Minneapolis, facilities from EHR systems and ambiguities in the coding of clinical data, such
Minnesota as blood pressure, have so far prevented a full-scale deployment. We created an
4
international consortium and a model for sharing further ePCRN development
Department of Informatics, King’s College,
across a variety of ongoing projects in the United States and Europe.
London, United Kingdom
5
School of Electronic, Electrical and Com- CONCLUSIONS A means of accessing health care data for research is not sufficient
puter Engineering, The University of Bir- in itself to deliver a learning health care system. EHR systems need to use sophis-
mingham, Birmingham, United Kingdom ticated tools to capture and preserve rich clinical context in coded data, and busi-
6
ness models need to be developed that incentivize all stakeholders from clinicians
Department of Primary Care Clinical Sci-
to vendors to participate in the system.
ences, School of Health and Population
Sciences, The University of Birmingham,
Ann Fam Med 2012;10:54-59. doi:10.1370/afm.1313.
Birmingham, United Kingdom

INTRODUCTION

C
linical practice should be based on a solid foundation of evidence. A
health care system that collects data from routine care for research
and facilitates the use of evidence to improve care has been defined
as a learning health care system.1 As such, learning health care systems
require software systems capable of managing information-intensive clini-
Conflicts of interest: authors report none.
cal work flows.2 Considerable work has gone into aspects of this digital
infrastructure during the past 20 years. Pay-for-performance initiatives
CORRESPONDING AUTHOR combined with electronic health record (EHR) templates to aid coding
Brendan C. Delaney, MD, FRCP, MRCGP have been successful in promoting the adoption of treatment guidelines.3
Division of Health and Computerized prompts and reminder systems have been shown to improve
Social Care Research patient safety, enhance preventive activities, and increase adherence to dis-
Kings College London ease management pathways, including prescribing.4,5 Many of these features
7th Floor, Capital House
42 Weston St are promoted by the US meaningful use criteria for reimbursement of EHR
London SE1 3QD systems.6 In terms of generating greater research evidence, single EHR
[email protected] systems supporting large academic health sciences centers have been quite

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successful in providing support for research (eg, Kaiser practices, scattered geographically, and with no obliga-
Permanente, Mayo Clinic, Geisinger Health System). tion to participate in research, a combination of infor-
The development of systems to facilitate research within matics approaches and grid software engineering was
community practice settings has been absent, however. used to incorporate necessary privacy and approvals
Systems to facilitate research within community steps, enable the identification of suitable subjects from
practice settings is important. Primary care can recruit electronic health record data, and establish a standards-
research subjects that are difficult to find in specialist based approach in managing electronic remote data
centers, for example, people at risk of disease, patients capture.15 The project was built collaboratively around
with a new diagnosis, or older patients with complex open standards and open-source software. The research
comorbidities.7 intended to pilot methods that could be taken up inter-
As primary care is usually based in small community nationally rather than create a specific deployment and
practices, the problems of recognition, recruitment, and concentrated on the following key requirements. In each
follow-up of study subjects, maintaining data quality, case we describe the requirement, the solution adopted,
and standardization of interventions become important and our informatics approach. (A glossary of terms is
challenges for the successful completion of these stud- available as a Supplemental Appendix, at http://
ies.8 Among the principal tasks in any interventional www.annfammed.org/content/10/1/54/suppl/DC1.)
research study is the recruitment of a sufficient number
of subjects to constitute a statistically adequate sample Requirement 1: Identification of Subjects
size. A considerable effort has been made by research- From Clinical Data
ers and funders in many countries to organize groups Researchers are not allowed to access practice data to
of primary care practices into practice-based research identify subjects for research studies. In the United
networks, with defined organizational structures that States the Health Insurance Portability and Account-
primary-care–based studies support.7,9 ability Act Privacy Rule prevents such access, and in the
What is missing is the ability to use the EHR and European Union, interpretation of the Data Protection
workflow mechanisms to promote research within these Directive in many member states has a similar effect.5
networks.10 EHRs can be used to identify potentially
suitable subjects for research or to capture outcome Solution Adopted
data, or via prompts, they can remind staff to approach The ePCRN deploys a Web-based workbench (the
potentially eligible subjects.11 It should also be possible ePCRN Research Workbench) to enable researchers to
to link separate sites for larger-scale research projects.12 specify eligibility criteria and create a distributed query
The development of standards for exchanging clini- of EHR data. Searches run against registered reposito-
cal information, which also facilitate integration and ries of clinical data, which can be either an individual
aggregation of such data, is proceeding rapidly both in EHR or a local data aggregation of EHR data main-
Europe and the United States, along with robust Inter- tained by a local health care organization with a number
net technical standards and Web services.10 A solution of practices. Both are known as ePCRN gateways. The
to the problems of security, identity, and data discovery queries return only counts of potentially eligible subjects
would offer the potential to create large networks of at each site and aggregated by network, protecting the
integrated systems to support research.13 The aim of the
electronic Primary Care Research Network (ePCRN) Figure 1. The learning health care system.
project was to facilitate clinical research (especially ran-
domized controlled trials) using primary care EHRs. In Safer clinical
this article, we describe the requirements identified, the practice
solutions and informatics approaches adopted, and the
lessons learned (Figure 1).
Software
Knowledge • Integration Epidemiological
ePCRN translation • Interoperability studies and RCTs
In 2005 the US National Institutes of Health funded • Services

the ePCRN project as one of 12 pilot projects for

the National Institutes of Health (NIH) Roadmap on
developing clinical research.14 The ePCRN developed More research
evidence
a pilot virtual infrastructure for the US Federation of
Practice-based Research Networks. Because practice-
RCT = randomized controlled trial.
based research networks consist of small independent

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privacy of the source data. With appropriate permissions from the open-source software distribution model
the researchers are able to flag, remotely, subjects identi- while providing adequate security.
fied as eligible for later contact by the patient’s clinician.
Informatics Approach
Informatics Approach ePCRN uses 2 grid tools, Globus Toolkit 4 (Univer-
The problem is that different EHR systems use dif- sity of Chicago, Chicago, Illinois) and OGSA-DAI
ferent coding systems (vocabularies) to represent (University of Edinburgh, Edinburgh, UK), for the
clinical concepts. We adopted the approach of a con- purpose of access to gateways and data transmission
trolled terminology, where a variety of terminologies (Supplemental Figure 1, available at http://www.
(SNOMED [Systematized Nomenclature of Medicine], annfammed.org/content/10/1/54/suppl/DC1).
ICD [International Classification of Diseases], and LOINC
[Logical Observation Identifiers Names and Codes], Requirement 3: Collection of Clinical Study Data
RxNorm) are mapped to a common concept, repre- The principal problem with electronic remote data col-
sented by the National Library of Medicine’s Unified lection is that, although Web-based systems allow for
Medical Language System (UMLS) (http://www.nlm. direct data entry from remote sites, the data collected
nih.gov/research/umls/). A Web “service” access to this may be no more standardized than that on a paper-
controlled terminology is integrated into the research based case report form. An intelligent system with in-
workbench. In addition, queries need a standard rep- built validation, for example, by within-range rules and
resentation so that the target databases can provide flow rules to enable skipping subsections, is necessary.
a consistent response. Accordingly, a standard model If data are to be passed from one system to another,
developed for the ePCRN project (the Primary Care however, more robust control of meaning is required.
Research Object Model v1.0, PCROM)16 was trans-
lated into a specific query for each target clinical data Solution
model. Using a defined data model gives the system For data to be interpreted in the same way by a differ-
wide flexibility in deployment, as the target databases ent system, implicit knowledge about the data or meta-
do not need to have a uniform, standard data structure data needs to be transmitted with that data. ePCRN
to work with the system so long as it can be mapped makes use of this metadata to create a machine-read-
into PCROM. Importantly, users are able to browse able document that represents the study in sufficient
terminologies, using a simple interface, to find which detail for its execution. This document is used by the
clinical terms are applicable for their study and explore system to deploy a variety of forms and linked data-
the effects of different study eligibility criteria on the
number of eligible subjects (Figure 2). Figure 2. The electronic Primary Care Research
Network (ePCRN).
Requirement 2: Appropriate Security
and Privacy Controls
Clinical Care Zone
To allow access to clinical sites, it is essential to have PCRN director Terminology
robust security capable of preventing unauthorized Electronic permissions tool service
health record
access both for users and potential external parties.
Patient-level data cannot be extracted from clinical
records, however, because the system is not designed Search ePCRN research workbench
to allow that; only counts are provided to researchers. ePCRN • Study design tool
Counts
gateway • Subject identification tool
Flag
• eCRF design tool
Solution Adopted
Participating sites are registered with the system,
and certificates at both ends of the search authorize For practice staff
only queries originating from and terminating in the Study repository

ePCRN servers. Access and authentication of users eCRF = electronic case report form.
on the ePCRN portal is controlled via secure Web Note: The ePCRN system functions in a modular fashion. A researcher is able
services. The software is not distributed but provided to create a standardized computable representation of their study eligibility
criteria using a Web-based workbench and a terminology service. With per-
as a service to authenticated users through the portal. mission from the network, the system creates a search tailored for the target
The security certificates, site registrations, and certifi- clinical data, referred to as a gateway. The gateway can be a copy of a single
health record system or an aggregate data repository. It holds records that are
cates are all generated as deployments of the gateway potentially identifiable, however, either directly or via pseudoanonymization.
software, such that each deployment can be separately The search reports counts of eligible subjects to the researcher, and then tags
the identified subjects for local recruitment by practice staff.
managed. This approach allows the project to benefit

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Table 1. Lessons Learned From the ePCRN (Electronic Primary Care Research Network) Project

Problem Potential Solution

Extracting coded data from an EHR loses information and may Promote the uptake of standard clinical concept representations,
introduce inaccuracies, as different EHR systems do not record such as archetypes based on the CEN/ISO 13606 standard or HL7
some clinical data items consistently, eg, blood pressure. Inaccu- detailed clinical models. Rather than a simple term, a more detailed
racies usually arise where the main terminology adopted within description of the clinical context and value of the clinical data are
the EHR is a disease-based classification, such as ICD, that only maintained
partially meets the system’s requirement for clinical terminology
Data extraction standards based on a snapshot transfer of EHR Promote mandatory adoption of HL7 information exchange standards
data on a given date (such as CCD/CCR) can be unwieldy when as an international standard for the exchange of data between and
data needs to be extracted on a repeated basis, and bulk export with EHR systems. Include the necessary terminology services to
facilities are rarely provided by EHR vendors map between different vocabulary systems where necessary
Clinicians and health care providers are rarely incentivized to Provide good clinical reasons for data quality and detailed record
maintain good data quality on the basis of research use alone keeping, such as audit or decision support
Legal and ethical constraints in many countries limit linkage of Promote international consensus as to how and when data can be
data and its use for research without consent linked without consent, and develop systems for managing consent
to extraction or study participation across systems. Include adoption
of privacy-enhancing technologies, such as filters and third-party
linkage systems
Researchers largely unaware of potential benefits offered by elec- Conduct well-publicized pilot deployments and evaluations
tronic systems to support research, and do not therefore create
demand for wider deployment

CCD =continuity of care document ; CCR = Continuity of Care Record; CEN = European Committee for Standardization; EHR = electronic health record; HL7 = Health
Level Seven International; ICD = International Classification of Diseases; ISO = International Organization for Standardization.

bases, complete with flow rules, validation, and display to map to the widely used standard for clinical data,
preferences. Similar to the subject identification func- the HL7 Reference Information Model (Health Level
tion, the workbench was extended to enable informat- Seven International, Ann Arbor, Michigan).
ics-naive users to manage studies, form collections, and
data elements through to project deployment.* Lessons Learned From the Project
The project was funded to provide a proof of concept
Informatics Approach and explore the feasibility of the proposed solutions
Specific data elements represent instances of more gen- to the research requirements. In the United States,
eral classes. For example, blood pressure can be defined the project aimed at a small number of demonstra-
as a standard data element with values for systolic tions in specific practice-based research networks, and
and diastolic pressure in milligrams of mercury at rest planned to use the American Society for Testing and
and by a protocol-defined method. The International Materials (ASTM) Continuity of Care Record (CCR)
Organization for Standardization/International Elec- standard18 as a standard representation of information
trotechnical Commission (ISO/IEC) 11179 standard to be extracted from EHRs where these existed and to
defines how repositories of such metadata standards add data from billing records and laboratory findings to
can be established and maintained. ISO/IEC 11179 is a create local repositories of clinical data, held within the
generic standard and requires a domain model to use clinical domain and called a gateway. Although a num-
it. A domain model is a representation of data types ber of EHR vendors in the United States had agreed to
and their relationships within a particular field of activ- provide the ability to export patient data in the CCR
ity, often expressed using a formal modeling approach. format, they had limited ability to export records with
The PCROM defines concepts and associated metadata the correct metadata tags to satisfy the CCR standard.
specific to primary care research and provides the rela- The main reason was that many EHR systems do not
tionships between them.16 To ensure that primary care use a concept-of-data type, simply placing all observa-
is not kept in a silo, unable to link to other domains, tion codes in 1 or 2 fields. In addition, market forces
the PCROM was also mapped to a less-specific model caused concern about exporting an entire database,
of clinical research, Biomedical Research Integrated resulting in the potential for dilution of vendor-specific
Domain Group (BRIDG) 2.0, produced via a collabo- solutions. Table 1 summarizes the principal lessons
ration between the National Cancer Institute caBIG from the project, and below we discuss the implications.
project and the Clinical Data Interchange Standards Simply providing a means of accessing health care
Consortium (CDISC).17 Via BRIDG, PCROM is able data for research is inadequate as a driver of adoption.
The principal problems of data access appear to be due
*It should be noted that PCROM v1.0 provides the framework by which a blood
pressure data element could be defined, rather than reaching down to that level of
to cultural rather than technical issues. Although it is
specification itself. feasible to create technical solutions to clinical data

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access across multiple, independent primary care prac- with this diversity of terminology is to assemble chosen
tices for research purposes, it has not happened to any codes in templates for use within particular care path-
large scale anywhere in the world for the same reason ways. An alternative strategy is to use archetypes rather
that gateways have failed to be widely deployed in the than using the terminology alone. An archetype is a
United States. Because the business model for EHR ven- small standardized representation of a piece of clinical
dors does not include research facilitation, the extent to data, defined by the European Committee for Standard-
which an EHR addresses population-based issues, such ization/International Organization for Standardization
as quality improvement and patient safety, depends (CEN/ISO) 13606 standard, that allows for the clinical
primarily on such national initiatives as the Quality and context in which data was recorded to also be stored
Outcomes Framework (QOF) in the United Kingdom and maintained, independently of the EHR system, the
and meaningful use in the United States.18 In particular, database format or the terminology used.19 For example,
the QOF is an important example of what can be done a blood pressure archetype would record systolic and
when targets are linked to payments and facilitated by diastolic pressure correctly, note whether the patient
technological development. In the United Kingdom was lying or standing, on or off treatment, and the
and the United States, contractual and reimbursement location of the reading (ambulatory, home, or clinic).
initiatives are in place to promote the uptake of EHR Archetypes may also contain coded terminologies for a
systems with specific functionalities, but these do not chosen concept.20 The widespread use of archetypes in
in our view go far enough to solve the current market EHR systems may present a solution to the problem of
failure whereby EHRs are sold as a single solution in lack of detail in terminologies and provide a means of
a highly fragmented market, rather than being able to spreading innovation throughout EHR systems.
work together to provide different functions. Recognizing that further funding would likely
Simple mapping of vocabularies is inadequate in cou- be from a variety of funders and addressing specific
pling the research and clinical domains. The entire prem- national or regional priorities, the ePCRN project has
ise of the learning health care system rests on the ability created a formal consortium with the aim of continuing
to exchange data between clinical and research systems the international collaboration around the following:
(system interoperability). Terminology services that map 1. Development and maintenance of the PCROM
one terminology to another are a necessary but not suf- model to ensure continuing linkage to BRIDG and
ficient approach to this problem. The development of to establish the model as a standard for primary care
standards in data models is an international problem that research. This effort is now taking place via the Euro-
requires an international solution. At present, this work pean Commission Seventh Framework Programme
is being carried out from the research perspective under TRANSFoRm project (http://www.transformproject.eu).
the auspices of CDISC, a consortium originally set up to 2. Completion of the ePCRN clinical trials work-
ensure interoperability of data for the commercial clinical bench through to a controlled demonstration. The sin-
trials community, HL7, supported by EHR vendors, and gle biggest issue for ePCRN was getting appropriately
caBIG, until recently supported by the NIH. The needs coded data from EHR systems. Ongoing work empha-
of the learning health care system require a greater inte- sizes the provision of controlled vocabularies through
gration of research and clinical data standards, already Web services to facilitate this process.
evident with the mapping of BRIDG v3 to the HL7 Ref- 3. The ability to scale a production-based solution
erence Information Model and a much deeper delving present new challenges with versioning and mainte-
into domain concepts in contrast to simple data items. nance. The consortium will provide a mechanism for
Support for this work, as well as the maintenance of negotiating and standardizing Web services within the
terminology services, needs to be built into the business proposed model.
models that support the meaningful use of EHRs. 4. Development and maintenance of the ePCRN
EHR systems need to use more sophisticated tools software as an open-source consortium and to facilitate
to capture and preserve rich clinical context in coded deployment of portals and gateways based on the sys-
data. To reuse EHR data directly as research data (or tem. The key requirement is the active involvement of
e-source), the recording of clinical data needs to be either EHR vendors or established third-party solutions
controlled as precisely as the collection of research data. for data access. Developing a robust business model for
Most EHRs allow for searching for simple text matches achieving this in any network setting is a priority.
among available codes, and some for traversing a hier- The creation of learning health care systems can be
archy of codes where these are part of a classification achieved only through major international collabora-
(such as ICD-10 [International Classification of Diseases, Tenth tion and multidisciplinary collaboration. A consistent
Revision]), but the array of preferred terms and synonyms vision of system function and oversight is necessary for
presented can be confusing. The usual means of dealing establishment of a single shared architecture. Steps that

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Funding support: ePCRN has been funded with Federal funds from the
Table 2. Steps That May Support a Learning National Institutes of Health, under contract No. HHS268N200425212C,
Health Care System “Re-engineering the Clinical Research Enterprise.” Further funding in the
United Kingdom has been provided by the NIHR National School for Pri-
Knowledge translation mary Care Research. The TRANSFoRm project, which is partially funded by
Develop meaningful use of the EHR to support diagnostic and the European Commission, DG INFSO (FP7 247787), will contribute to the
therapeutic support based on evidence further development of software under the ePCRN consortium 2010-2015.
Develop a computable representation of research evidence and
make that available to EHR systems as a Web service
Develop a means of providing diagnostic or therapeutic prompts
within an EHR that works across a variety of EHR systems
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