California Health eQuality Project Summary
Inspire Athena
January 2014
PROJECT NAME
Integrating Public Health and Clinical Data Exchange – INSPIRE
PROBLEM
The integration of clinical care and research systems is the key to the transformation of our industry.
Project INSPIRE aims to identify a process for enabling real-time collection of key data elements on
cancer patients by clinicians at the point of care, and develop the technology to certify and
propagate this information downstream to researchers and disease registries and vice versa. Cancer
in general, and breast cancer in particular, represents a specific high-impact condition of interest to
public health and clinicians alike, and therefore was selected as the use case for exploration in this
initial phase of the INSPIRE project.
SOLUTION
The Athena Breast Health Network is the demonstration venue for this project which developed a set
of tools for physician data capture at the point of care. The first critical step was to understand the
clinician workflow and to design a way to simplify data collection that aligned with clinician needs
and workflow. As such, the Project INSPIRE team visited each UC Medical Center within the Athena
network to investigate clinician workflows and systems to help identify opportunities for structured
data capture and integration. Four UC sites participated in over 45 key informant interviews with
clinicians, practice managers, cancer registrars, and other stakeholders to map current processes
and opportunities. Specifically, the project team focused on handoff and interfaces between clinical
workflows and data capture/validation/utilization through existing Health Information Exchange
mechanisms or any internal systems. The workflow analysis identified over 350 barriers in the
clinical data workflow process, and emerged a solution to create useful, actionable data between
research and care by developing disease-specific, standardized data checklists. Integrated checklists
are a method of obtaining key decision relevant at critical points in the care of a patient (prechemotherapy, pre-surgery, etc). This data can then be used downstream in dozens of other ways –
central data repositories, clinical treatment summaries, registry reporting, etc. without need for revalidation. One critical transformation is the clinician’s role in reporting data so that clinicians are
California Health eQuality Project Summary
Inspire Athena
January 2014
responsible for entering and verifying key data elements, which they will ‘own’ and enter data per
their specialty into these checklists.
Checklists were developed and vetted by the Athena network clinicians, and align with the ASCO
Treatment Summary and Survivorship Care Plan elements. The end result is managed data exchange
by standards that enable electronically transmitted data to be sent and reconstituted using a standard
known as a Continuity of Care Document (CCD) in the form of a ‘checklist’.
RATIONALE FOR SOLUTION
Rather than rely on separate work force to extract data, clinicians need to develop the discipline and
the tools to help us capture the important data as a routine of care. In return, clinicians and
researchers will get real-time, quality data that can be used for clinical decision making and registry
reporting.
This project promotes an XML-based mechanism for checklists that any vendor can implement into
their system to collect and certify the structured data once at the point of care. The XML-based
approach is ubiquitous, widely supported through programming libraries, and has validation, which
allows for the implementation of a specific XML schema straightforward. This has been demonstrated
as such with the Clinical Data Architecture (CDA) standard, CCD, and College of American
Pathologists electronic Cancer Checklists (CAP eCC). Compliance with this standard can be enforced
using a well-established network- IHE (Integrating the Health Care Enterprise), an organization that
has worked across all industry vendors to certify that they can accept data in the CCD format and to
place it in critical places where clinical summaries can be seen “at a glance”.
Structured data packaged and shared through health information exchange (HIE) standards and
adopted by industries across the board has tremendous value to clinical care and public health
registries. Project leaders worked with members of the California Cancer Registry at the local,
regional and state levels, as well as professional societies and standards bodies in the U.S. to help
promote the standard, and to integrate these standards into meaningful use of electronic health
records (EHRs).
OUTCOME AND NEXT STEPS
The next step is to seek funding to implement the developed Athena-INSPIRE clinician checklists
across the Athena network (5 UC campuses and X Sanford hospitals/clinics)
California Health eQuality Project Summary
Inspire Athena
January 2014

Develop a strategy to implement the concept of the Health Information Home as a non-profit
venture in California to support a longitudinal health record for breast cancer patients.

Continue collaborations with ASCO, HL7, College of American Pathologists, UC Davis IPHI,
and the California Cancer Registry in advancing innovative approaches to data capture and
data exchange.
The NCQA (National Center for Quality Assurance) should be engaged in this endeavor so that
they can work to improve the quality measures that can be used nationwide as part of the Health
Effectiveness Data and Information Set (HEDIS) measures for health plans across the country. At
the point that the schema has been validated and demonstrated successful integrations, it should
be promoted as an industry standard.
BENEFIT
This project advanced our understanding of direct data capture from clinicians at the point of care to
support a cancer registry

Validating a new standard in data exchange for summary treatment information in cancer
care. Vetted CDA standard

Uncovered inefficiencies through a workflow process map that are important in reengineering the process