The document summarizes a study that hosted focus groups with state birth defect surveillance programs to learn about their practices. Two focus groups were conducted via WebEx due to time constraints, covering topics like data collection, surveillance, quality assurance, outreach, and hospital reporting. The focus groups provided an opportunity for states to learn from each other's practices. Key discussion points included the need for updated legislation, improved communication between states, and a lack of standardization in hospital reporting. The majority of states that were invited did not participate in the focus groups.

1. Using Focus Groups to Survey Practices of State Birth
Defects Surveillance Programs in the United States
Nerissa George, MPH Candidate, Amanda St. Louis, MS, Deb Fox, MPH, and Marilyn Browne, PhD
ABSTRACT
Introduction:
The New York State (NYS) Congenital Malformations Registry (CMR) is currently
exploring modifications to various elements of registry operations, including the
types of birth defects collected, data collection methods, and how to conduct
outreach to parents. Focus groups were hosted by the CMR to learn about current
practices from other states.
Methods:
A survey was drafted and finalized over a six week period and was used to
structure each focus group. An interest survey was sent to 40 state surveillance
programs managers through Survey Monkey to assess their willingness to
participate. Five topics of interest were selected. Each focus group was scheduled
for 45 minutes via WebEx. Discussions from each focus group were summarized
and distributed to survey participants.
Results:
Forty-five percent (18/40) of states responded to the Focus Group Interest Survey.
Only two focus groups were conducted due to time constraints. The topics
addressed were: Data Collection, Surveillance, Quality Assurance, Outreach, and
Hospital Reporting and Compliance. All participants provided in-depth responses
and found the discussion to be highly informative and thought provoking when
thank you/ follow up emails were sent out.
Discussion:
This project highlighted the differences between states’ surveillance programs
nationwide. The intention of hosting focus groups was to help educate and create
awareness of practices conducted by other states’ surveillance programs to
participants. The information obtained from the focus groups will be very helpful
for CMR planning and will be shared with other registries.
BACKGROUND
New York State Congenital Malformations Registry
New York State Congenital Malformations Registry (CMR) has been conducting
birth defects surveillance for New York State residents for over 34 years. CMR is a
part of the National Birth Defects Prevention Network (NBDPN). The NBDPN is a
volunteer-based organization that maintains a national network of state and
population-based birth defects programs and aims to improve the quality of birth
defects surveillance data. Changes in technology and the implementation of the
International Classification of Diseases Tenth Edition, also known as ICD-10 codes,
justify a re-evaluation of data collection methods and other surveillance system
practices. The CMR is currently exploring modifications to various elements of
registry operations, including the range of birth defects collected, details
surrounding data collection, and how they handle outreach to parents.
OBJECTIVES
• Improve NYS CMR operations.
• Increase the knowledge of CMR staff regarding practices of other state
surveillance programs.
• Create awareness of different practices conducted by other states’ surveillance
programs to focus group participants.
• Discuss current operational challenges that hinder surveillance programs.
METHODS
• An informational survey was developed and finalized over a six week period.
• A Focus Group Interest Survey was sent out to 40 state surveillance programs
who belonged to the NBDPN to recruit participants via Survey Monkey, the link
was sent to their work email addresses.
• Doodle poll was utilized to assess participants’ availability.
• WebEx was used to conduct the two focus groups.
• Topics of the Focus Groups were Data Collection, Surveillance, Quality
Assurance, Outreach, and Hospital Reporting and Compliance.
• Data Collection covered which birth defects are included and how
programs obtain case reports.
• Surveillance addressed coding methods, data extraction methods, and
staffing issues.
• Quality Assurance discussed auditing practices, clinician review, assurance
of complete and accurate data.
• Outreach addressed the efforts conducted by programs and their partners
to provide information to parents/guardians.
• Hospital Reporting and Compliance discussed monitoring for compliance
and possible penalties for non-compliance.
• Results were summarized and shared with participating states.
States
Represented
Year
Began
Surveillance
Population
Type
Focus
Group 1
Focus
Group 2
Florida 1998 211,228
Passive with
Follow-Up
 
Illinois 1986 155,000
Passive with
Follow-Up
 
Maryland 1983 75,000 Passive  
Minnesota 2005 70,000 Active 
New York 1983 250,000
Passive with
Follow-Up
 
Rhode Island 2000 10,500 Active and Passive 
Vermont 2006 6,200
Passive with
Follow-Up

RESULTS
RESULTS
DISCUSSION
The focus group format enabled participants to increase their knowledge of different
practices conducted by other state programs. Each focus group was diverse in regards to
the age of existence of each surveillance program, the reporting type (active, passive, or
passive with follow up), and the population size they serve. CMR staff learned about
practices that had worked well as well as those that worked poorly in other states,
enabling states to learn about evidence based programs that might also work for them. A
limitation of our focus groups was the short length of time scheduled for each group as
well as the short time frame individuals had to respond to be eligible to participate.
Overall, the information shared within the focus groups were very informative and states’
who participated are willing to participate again. Through the positive feedback from
participants, it is anticipated that more forums of this style should take place in the
future.
Key Points from Each Focus Group
Data
Collection
There is a major need for states’ legislations
to be updated in order to encompass the
future directions of the programs. Multiple
state programs expressed the need for
adjustments to their current legislations.
There is a lack of communication between
neighboring state surveillance programs,
which causes possible cases of birth defects
to be missed due to residents crossing state
borders for medical treatment.
Surveillance
Creating collaborations between Newborn
Screening Programs and State Surveillance
Programs has allowed multiple programs to
identify missed cases.
Creating a program that applies both an
active and passive reporting systems can
decrease the possibility of a diagnosed birth
defect going unreported.
Quality
Assurance
Enhanced case finding and case confirmation
has allowed surveillance programs to
strategically prioritize conditions of interest
which has active case finding and case
confirmations for passively identified cases.
Quarterly compliance reports are generated
and are reviewed with each hospital on an
annual basis by a member of the state
surveillance program. This report gives
reporting sources the opportunity to improve
their problem areas for the following year.
Outreach
Incorporating outreach methods into the
infrastructure of a surveillance program
increases feasibility for programs to conduct
effective outreach efforts.
Some state surveillance programs update
their Facebook pages on a weekly basis and
use department web pages to provide
resources to parents.
Hospital
Reporting
and Compliance
There is a lack of consistency between states
in regards to the standardization/dictation of
how hospitals report to state surveillance
programs.
If facilities are not compliant with reporting,
some state surveillance programs have the
authorization to deny hospitals permission to
open/close or build additional wards.
82.35%
76.47%
41.18%
58.82%
41.18%
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
Data Collection Surveillance Quality Assurance Outreach Hospital Reporting
and Compliance
Focus Group Topics of Interest
Topics of Interest
InterestLevelPercentage
FOCUS GROUP INTEREST SURVEY RESPONSE RATE
• Out of 40 state surveillance programs, only 17 responded and willing to
participate (42.5%).
• One state surveillance program was willing to participate, but couldn’t.
• 22 programs did not respond to the interest survey (55%).
• In order to sustain interest, we combined topics of high interest with those
of lower interest. Participants appreciated this and remained engaged
throughout the duration of each focus group.