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Chronic Disease Registries
Business
problem
Managing the care of patients with chronic diseases is challenging
for busy primary care physicians. Every member of the care team
needs a systematic way to track issues, treatments and outcomes.
Managing the disease in a population presents a different challenge.
An electronic medical record (EMR) is good at tracking the care
of individuals, but not necessarily for a population. With or without
an EMR, special tools are needed.
Managing
without an EMR
One of the first requests of our team was to develop tools to help
manage the care of patients with three chronic diseases:
- Pediatric
asthma
- Diabetes
mellitus
- Depression
We
were still in the early stages of implementing the Epic ambulatory
EMR, and it would be at least two or three years before most physicians
had full EMR access. Waiting for the full EMR was clinically not
acceptable. Reluctantly, we concluded that we had to build a sort
of mini-EMR, knowing that it would be discarded once the full EMR
was implemented.
The
clinical team working on pediatric asthma was the furthest along
with planning, so the asthma registry was the first to be built.
One
of the first issues was determining which data elements could be
extracted and displayed from the Meditech system, and which would
need to be manually input into the registry:
- Demographics
and encounter history were available from Meditech
- Lab
test results, medications and allergies were not extractable from
Meditech
This
meant that we needed a way to manually input the data that could
not be extracted from Meditech. The first step was to have each
pediatrician identify and register all patients with asthma in his/her
panel (click the partial form below to see the full registration
form).
[Click
the image above to see the full size image]
Once
registered, detailed data for each patient were input through a
set of interactive forms, as listed along the right of the screen
shown below (click the image below to see the full size screen).
Each form (as selected from buttons on the right) displayed data
relevant to the specific encounter (as selected on the left).
[Click
the image above to see the full size image]
The
action plan is an absolutely essential tool to help asthmatic patients
and their families manage their health. Producing an on-demand,
printable action plan (click the image below to see a full plan)
that exactly matches the state-approved form was a challenge.
[Click
the image above to see the full size image]
A set
of management tools were built to help providers manage their pediatric
asthma patients:
Diabetes
mellitus
The second registry was to track the care of adult diabetes patients.
The user interface used the same framework as the asthma registry,
with some different forms listed on the right side (click the image
below to see the full-size screen).
[Click
the image above to see the full size image]
The
diabetes work sheet is arguably one of the two most important tools
in this registry, providing a way to track A1c scores in the context
of many other measures (click the image below to see the full-size
screen).
[Click
the image above to see the full size image]
The
other essential tool was the diabetes goal sheet. Like the asthma
action plan, the diabetes goal sheet is primarily a tool for the
patient (shown below).
A set
of management tools were built to help providers manage their diabetes
patients:
General
tools
In addition to the disease-specific registries, two tools were created
to generate lists of patients with:
- scheduled
appointments or
- missed
appointments,
using
any combination of the variables shown below.
Depression
registry sputters
Despite two efforts, the depression registry never really achieved
significant traction prior to the Epic implementation. Among the
reasons:
- Least
well-developed workflow of the three diseases, complicated by
the fact that two clinical departments were involved
- Difficulty
agreeing on a security model (i.e., which users of the asthma
and diabetes registries should know that a patient is in the depression
registry and/or be able to see the depression registry contents)
- Registry
fatigue — busy primary care providers were already stretched
trying to fully utilize the first two registries
Managing
with an EMR
Once the Epic ambulatory suite was implemented, registry tools related
to individual patients were redundant. However, the registry tools
for managing patient panels or larger populations were still very
important because the Epic EMR is designed to manage the care of
individuals, not groups. By far the most frequently used item now
is the diabetes worksheet (shown above). Several of the diabetes
reports listed above are also used quite frequently (listed below
in descending order of popularity):
- Diabetes
HgbA1c Distribution Aging Report
- Diabetes
Eye Visits Aging Report
- Provider
Report
- Diabetes
HgbA1c Distribution Report
- Diabetes
LDL Distribution reports
- Diabetes
Microalbumin Distribution reports
The
other frequently-used tools are the dashboards:
Future
registries
As can be deduced from the ADHD dashboard, a fourth chronic disease
registry has been added and more are planned. Like the ADHD registry,
new registries will follow a simpler model. Patients will be identified
by an automated process examining diagnoses, medications and/or
test results, and automatically added to the relevant registry.
A registry dashboard (and perhaps another report or two) will be
created to help manage the care of registered patients in groups
such as primary care panels.
Outcomes
The three original registries had quite different results. The asthma
registry was the most successful.
- For
patients who were enrolled in the asthma registry for two years,
there was a statistically significant drop of 50% in asthma-related
emergency department visits when comparing the one year period
prior to enrollment in the registry with the second year of enrollment
in the registry.
- Asthma-registry
patients also showed a statistically significant drop of 45% in
asthma-related hospitalizations for the same time periods.
- Diabetes
registry patients showed mixed results, with some improvements
but nothing significant enough to be compelling.
Lessons
learned
- One
of the early, critical design decisions for the registries was
how to handle security for different registries.
Because there was no overlap in patients between the asthma and
diabetes registries, and the depression model was undefined, we
decided not to try to partition each registry from the others.
That was a mistake. When we finally were ready to work on the
depression registry, re-engineering the security model for all
the registries was a huge effort. It would have been better, in
the absence of a clear consensus about how to handle security,
to take a conservative approach and build clear partitions between
all the registries.
- Regardless
of benefits offered, we found it extremely difficult
to get providers to input data in the pre-EMR registries.
Everyone was busy and reluctant to accept another administrative
task. The quality management department tried to fill the gaps
with temps to input data on behalf of providers, but this was
an unsatisfactory workaround, and a real solution was never found.
- Training
providers in registry use
must be identified from the beginning as a significant commitment,
and resources allocated. As so often happens with training, we
tried to handle it without adding expense, and quickly learned
that it was a much larger task than anyone anticipated.
Posted 13 May 2008
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