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Building a Patient Registry From the Ground Up
By identifying your patients by condition, you can be more proactive in getting them the care they
need.
Covered in FPM Quiz
Brandi White
If someone were to ask you today to present a registry (or a list) of all your patients who have
diabetes, could you do it? Would it be comprehensive or sketchy? Would it take you months or
mere seconds to produce? And would you know what to do with that registry if indeed you had
one?
Earlier this year, the 17 practices that belong to Family Care Network, a northwest Washington
group without walls, embarked on a quality improvement (QI) project to change the way they
care for their patients with diabetes. One of their first realizations was that they didn't know -didn't really know -- who their diabetic population was. Patient registries within the individual
practices varied in sophistication and ease of use, from a 3x5 index card system to a simple
computerized spreadsheet. Some practices had no registry at all.
As a family physician, you've
been handed the incredible
responsibility of caring for
hundreds of human beings.
Today, just halfway through its QI project, the
network is on the verge of having access to a
communitywide, intranet-based patient registry that
will help them be more proactive in managing
patients' conditions. These are the issues they've had
to tackle along the way.
How do you identify patients with a given condition?
The prospect of building a comprehensive patient registry from scratch may seem daunting, and
rightly so. At a minimum a registry would contain patients' names and contact information;
ideally it would also include pertinent clinical information for each patient. You can't get there
overnight, of course, but the advice from Family Care Network's QI team is simply to start
somewhere.
There are three primary sources for finding the names of patients who belong on your registry:
1. In-house records. Only recently, the practices within Family Care Network installed a
computer system that allows them to search for patients by ICD-9 code. With very little effort, the
physicians can print out a list of patients who have had an ICD-9 code for diabetes. Of course,
like most computer systems, it has its limitations. "If a person's last diabetic visit occurred prior to
when we installed the new computer system, they're not on the list," explains Steven Alexander,
MD, medical director for Lynden Family Medicine, one of the Family Care Network sites. But
over time, as more and more patient data are stored in the computer system, it will develop into a
sizable group of patients who can be targeted for improvement.
If a practice's computer system cannot search by ICD-9 code, there are still ways to find patients
who belong on the diabetes registry. For example, you may be able to search patient records for
those whose medication lists include insulin. Or you may be able to draw the data out of your
billing system by searching for patients who have been billed for any service related to diabetes.
Practices that do not have searchable computer data can do it the old-fashioned way, by mining
their paper charts. The process will be labor-intensive, but it will turn up the data you need. Chart
by chart, you simply identify patients who have diabetes and add them to your list.
2. Health plan data. To determine the names of patients with diabetes that their own systems
could not capture, representatives of the Family Care Network QI pilot sites went to the health
plans they contract with and asked, "What data can you give us?"
Northwest Washington Medical Bureau, a local insurer, drew on its pharmacy data to provide the
practices with a list of patients who, in the prior six months, had received a prescription for either
an oral agent or insulin to control their diabetes. "That won't include people with diabetes who
aren't on medicines yet, and it won't get the clinic all of its diabetics, but it gets them started,"
says Chelle Moat, MD, MPH, the insurer's medical director for quality management.
Alexander cautions that, to treat all patients equally regardless of insurance type, practices should
seek out data from more than one health plan.
3. The office visit. After consulting in-house data and health plan data, a practice should have a
sizable registry, though still not a complete one. Claims and pharmacy data will not be able to
identify patients who aren't coming in for their checkups, who aren't insured, or whose diabetes is
being managed by diet, not medicines. Practices will have to be on the lookout for those patients
as they come in contact with the office, most likely for reasons unrelated to diabetes.
One way to find these additional patients is to ask yourself at each visit, "Does this patient belong
on the diabetes registry?" If so, add him or her to your list, and add a diabetes flow sheet to the
patient's chart. (An upcoming article in this series will examine how to use flow sheets to keep
track of patients' care.)
How do you organize the data?
Series Overview
This article is the second in a series that
follows Family Care Network, a
northwest Washington group without
walls, as it tackles a 13-month quality
Not all patient registries are created equal. According
to a system self-assessment published by the Sandy
MacColl Institute for Healthcare Innovation, part of
the Washington state-based Group Health
Cooperative of Puget Sound, practices can grade
their performance in the area of patient registries as
follows.
Grade D: There is no registry (defined as a list of
patients with specific conditions).
Grade C: There is a registry on paper or in a
computer system; the registry includes patient name,
diagnosis, contact information and date of last visit.
Grade B: The registry is searchable, allowing
clinicians to query the data.
improvement project focused on chronic
disease care. The project is headed by the
Institute for Healthcare Improvement and
involves approximately 30 organizations
nationwide, with half studying diabetes
and half studying congestive heart
failure.
The first article in the series provided an
overview of the QI process (see
"Improving Chronic Disease Care in the
Real World: A Step-by-Step Approach,"
October 1999, page 38). Coming articles
will explore how to "pre-plan" diabetic
visits, how to keep track of what services
patients need and how to work with
patients to set self-management goals.
Grade A: The registry is integrated with clinical
information and tied to guidelines that provide prompts and reminders for care.
Registries will vary with the capabilities of individual offices but every practice should in time be
able to achieve the C grade, which requires only that the information be recorded on paper. A
more advanced and more useful system would be to organize the information in a computerized
database or spreadsheet program, such as Access or Excel, which would allow you to search,
analyze and manipulate the data. The ultimate goal is to link the registry with patients' clinical
data and with guidelines that remind physicians and staff members of what patients need to have
done.
Family Care Network is moving closer toward the "A" grade, something the groups couldn't have
imagined just a few months ago, with the help of their local hospital -- the only hospital in the
area. For several years, each practice has housed a computer terminal that connects to the
hospital's information system, allowing the practices to look up X-ray reports, discharge
summaries, etc. But now that same computer system is the home of a growing community patient
registry. In August, the first practice loaded its personal patient-registry data into the system, and
providers throughout the community are close behind.
Patients' family physicians, as well as other specialists involved in the patients' care, will be able
to access the system and contribute their own clinical data. Patients who used to fall through the
cracks between their visits to the family physician and endocrinologist can now be tracked. And
some data, such as results from the hospital's lab, will be loaded into the community registry
automatically.
"Two months or even a month ago I don't think we could have really identified who our diabetic
patients are," says Jody Fox, RN, who input the first set of data into the community registry.
"Now, I'm going to be able to push a button."
How do you use the registry?
Of course simply having a list of patients with diabetes won't make a difference in patient care
until you "actually use the registry to try and keep people up-to-date and improve their
outcomes," says Berdi Safford, MD, medical director of the network.
When put to use, a well-organized patient registry enables practices to be more proactive, to reach
out to patients, to establish regular communication with them and to manage their diabetes (or
other conditions) better. For example, by having a registry that lists the names of your patients
with diabetes and their key clinical measures, you can quickly identify which patients need a
reminder phone call, which patients' HbA1c levels need monitoring and so on.
Another important use for the patient registry is in helping you measure your practice's
performance on key health outcomes. "You're trained to do a good job, you believe you're doing a
good job, but you don't have any way to know unless there's a way to measure it," says Moat.
A registry helps you capture data on a particular patient population and enables you to answer
questions such as these: Are HbA1c levels getting lower over time? Are your patients with
diabetes getting their eye checks on time? Is their blood pressure under control? Are they
becoming healthier as a group?
As a family physician, you've been handed the incredible responsibility of caring for hundreds of
human beings. By understanding who that population is and what their exact needs are, you can
proactively care for them and improve their health.
This article exemplifies the AAFP 1999 Annual Clinical Focus on management and prevention of
the complications of diabetes.
Brandi White is a senior associate editor of Family Practice Management.
Copyright © 1999 by the American Academy of Family Physicians.
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