KDOC: Building A Clinical and Claims Data Repository for QI

The Kentucky Diabetes and Obesity
Collaborative (KDOC)
Kevin Pearce, MD, MPH
UK Department of Family and Community Medicine
Jeff Talbert, PhD
UK Department of Pharmacy Practice and Science
Mark Dignan, PhD, MPH
UK Department of Internal Medicine
David Bolt, MA
Kentucky Primary Care Association
F. Douglas Scutchfield, MD
UK College of Public Health
Supported by NIH grants:
NIDDK # 1RC4DK809866
NCATS # UL1TR000117
The Kentucky Diabetes and Obesity
Collaborative (KDOC)
KDOC partnering organizations
• Kentucky Primary Care Association (KPCA)
• Individual FQHCs
• Kentucky Medicaid
• University of Kentucky
• Academic Health Center
• Center for Clinical and Translational Science
• Center for Public Health Systems and Services Research
Overarching goal:
Activate new collaborations to improve quality
and create opportunities for research
Support IPA
ACA Expansion
The Kentucky Diabetes and Obesity
Collaborative (KDOC)
Develop a healthcare data repository that
will be used to improve the health of Kentuckians via
QI activities and research.
The KDOC data repository will bring together up-todate clinical data from multiple primary care safetynet providers, plus Medicaid claims data, all linked at
patient level. Secure web-based portals and special
software will facilitate use while maintaining
appropriate levels of privacy and security.
The Kentucky Diabetes and Obesity
Collaborative (KDOC)
Project Rationale
• High prevalence of obesity and diabetes in a large
rural and medically-underserved population; much of
which relies on “safety-net” providers, such as FQHCs
• Utility of being able to monitor and use clinical and
claims data linked at patient level, and across
healthcare facilities
• Built-in utility for more broadly improving healthcare
The Kentucky Diabetes and Obesity
Collaborative (KDOC)
Project goals
• Develop a secure data repository
• clinical data from rural PCPs
• Linked Medicaid claims data
• Develop secure, user-friendly data interfaces for
providers and researchers
• Assess related training and support needs, and
provide the training/ support to KDOC users
• Facilitate research and healthcare QI collaborations
The Kentucky Diabetes and Obesity
Collaborative (KDOC)
Project goals (cont’d)
Address gaps in generalizable knowledge about:
• The effective use of HIT for chronic care coordination
and related research in rural settings
• Systems-oriented collaborative QI strategies for
improving the management of chronic conditions in
primary care
• Effectively connecting AHC-based researchers and rural
health disparity populations
Participating Federally-Qualified
Community Health Centers
Eight Community Health Centers (FQHCs) serving 39
mostly rural Kentucky counties; diabetes prevalence as
high as 17% and obesity prevalence as high as 51%
2 to 15 clinic sites / FQHC with 6 to 31 providers / FQHC
19,900 to 143,000 annual patient visits per FQHC
Approx 124,000 patients served by the 8 FQHCs, total
Five different EMR brands across the 8 FQHCs; time since
EMR implementation: from < 1 year to several years
KDOC 3-Yr Project Approach
1. Establish leadership, steering and advisory groups
2. Simultaneously pursue interpersonal and technical
aspects of KDOC development
build KDOC-specific collaborative relationships (BAAs, MOUs)
establish stakeholder priorities for HIT tools and functions
understand stakeholder opportunities and barriers related to
collaboration around QI and research
Understand technical aspects of data storage and sharing
capabilities of each EMR system
establish HIPAA compliant methods for developing and using
the KDOC Data Warehouse
explore utility of KHIE for KDOC
build or buy user-friendly data interfaces for QI and research
KDOC Project Approach (cont’d)
3. Simultaneously: (a) Obtain IRB approval for data
transmission, storage, and general use
(b) design and pilot a DM QI project involving the FQHCs
4. Populate KDOC data repository with clinical data
from each FQHC, and with Medicaid claims data for
matching time periods; data de-identified but coded for
linkage at patient level
5. Simultaneously: (a) Perform pilot clinical QI project
(b) facilitate use of KDOC infrastructure for research
Throughout: plan for sustainability of infrastructure
KDOC Focus Groups
Conducted at 6 FQHC offices in rural Kentucky
Included providers, office staff, IT representatives
45-60 minutes
Tape recorded, transcript analysis
Focus Group Discussion Topics
Perceptions about obesity and diabetes rates in rural
Perceived role of research in prevention and control of
diabetes and obesity…probing:
Experience with research
Barriers and facilitators of research with rural FQHCs
What is needed to increase participation in research
Communication and collaboration between providers
and researchers
Implementation of Evidence Based Practices in DM
Focus Group Findings
• There is interest in participating in and promoting research in
FQHCs (and in partnering with UK)
• Research is most likely to be successful when initiated by
• Participating with KDOC can help FQHCs with capturing clinical
data, developing reporting, and perhaps QI
• Use of EHR, or similar mechanism, for data collection is preferred –
something that can be integrated into the flow of the practice
• FQHCs not hesitant to share data as long as patient privacy
protections are in place
More Focus Group Findings
• Mild concern that KDOC will not be able to deliver information
needed for HEDIS reporting – concern about responsiveness of
KDOC to changes in guidelines
• FQHC experience with EHRs and government has been mixed
Ability to better manage practice is a plus
Concern about monitoring by those outside the practice is a concern
• Employee time for research is a barrier, need outside resources and
• IT assistance is needed for most projects
• Research partnerships are built on trust between patients and
clinics – and then researchers
Technical Strategy
KDOC vision: build QI tools that also serve as a
research platform
FQHCs – de-identified data beyond own site—need for regional
benchmark and peer comparison
UK-infrastructure for rural translational research network
8 initial FQHCs: using 5 EMR vendors
Kentucky Medicaid as a project partner
Technical Process
Diverse site technical infrastructure
Very vendor dependent (new EMR users)
Limited site IT staff (contractors, part time, busy
with day job)
Limited site database capacity (required flexible after
hours connectivity, multiple small reports)
Process: 1)Special KDOC data extracts
2)Core database access
3)Core EMR reporting tool
Technical Workflow
Complete regulatory documents
Select data extraction process
Load into ETL staging area
ETL process to standardize data
Load into KDOC data repositoryenable Tableau reporting tools
Regulatory: QI/ operations use
All sites have MOU and BAA with UK
Sites limited access to their own data, with
regional and national benchmarks for most
Research use requires additional limits and
using data for research
BAA and MOU required for each site
IRB #10-0493 The Kentucky Diabetes and
Obesity Collaborative (KDOC)
Uses UK EDT third party “honest broker”
Researcher access to de-identified data
IRB #13-0275-F6A, Kentucky Diabetes and
Obesity Collaborative (KDOC)
All users sign DUA, Complete HIPAA training
Data Use Advisory Committee reviews
research protocols
DUAC: Data Use Advisory
Address concerns over use of data
Function to advise on research data used
from the collaboration
Composed of providers and administrators
representing sites
All research protocols will be reviewed by
KDOC Data Repository:
Claims Data Progress and Challenges
Medicaid MCOs established during first
project year
Now working with Ky Medicaid QA/QI
Department to goal of having claims data
linked to clinical data in repository with
proper security
Reporting Tools for QI
Intent: develop custom reporting tools
Go beyond current reporting platforms
(greater flexibility than ‘canned’ reports)
Adopted Tableau analytic platform
Allows dashboards that are dynamic and
interactive---allows visualization of data to
generate new questions
Diabetes Care Monitoring
Tableau reporting models
Hypertension Care Monitoring
Conclusions so far
Interfacing with EMRs for data transfer into a
shared repository cannot yet be standardized.
EMR vendor characteristics and practice-based
concerns must be addressed one-by-one
Expert technical assistance is required for
practices to share clinical data for QI or research
EMR Vendors should be at the table from the
Conclusions so far
Benefits for each collaborating practice, payer and
research stakeholder cannot all be anticipated; they
will fluctuate, but staying focused on benefits and
value to each stakeholder is essential
e.g. Initial QI focus on UDS reporting, but later
expanded to HEDIS measures and MCO gain
Research and QI uses require different restrictions
and protections…..development of shared trust
among stakeholders across organizations is critical
And the biggest lessons…
Building a shared healthcare data
repository for multiple stakeholders:
is a very complex undertaking that takes much
longer than you imagine it will
has reward potentials that will grow and evolve
takes you outside your comfort zone, links you
with fascinating new colleagues and opens up
new vistas
Next steps
Expand into a much larger co-op that
stakeholders can use for
Quality indicator capture and reporting
Gainsharing with payers

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