January 7, 2019
Subject:
Docket No. CDC-2018-0097 Public Comment and Recommendations
Dear
Mr. Zirger:
ClearWay
MinnesotaSM respectfully submits this comment in response to the
Department of Health and Human Services Centers for Disease
Control and Prevention request for comments on the National
Quitline Data Warehouse (NQDW). ClearWay Minnesota is an
independent nonprofit organization funded with 3 percent of
Minnesota’s tobacco settlement. Our mission is to enhance
life for all Minnesotans by reducing tobacco use and exposure to
secondhand smoke through research, action and collaboration.
ClearWay
Minnesota has operated QUITPLAN Services, a statewide quitline for
Minnesota, since 2001. After noticing declining service
utilization, we redesigned QUITPLAN Services to better reach
commercial tobacco users. This redesign challenged the traditional
quitline definition of phone counseling plus nicotine replacement
therapy (NRT) by allowing participants to choose from a suite of
services including: a multi-session phone coaching program with
NRT, 2-week NRT starter kits, email and/or text programs, and a
printed quit guide. The redesign also emphasized improving the use
of technology, including offering both web-based and telephone
enrollment for all services.
Our
comments about NQDW data collection are heavily influenced by the
experience of evolving our quitline to best fit commercial tobacco
users’ needs as well as duplication of data collection
efforts. In general, we feel that the NQDW Quitline Services
Survey should be reevaluated to ensure it reflects the variety of
ways states are now providing access to quitline services and to
allow states to accurately report the breadth of services that are
being offered. We also think that the amount and types of data
collected need to be evaluated to ensure that they are still
needed and are being used. Finally, the North American Quitline
Consortium (NAQC) conducts an annual survey that addresses the
similar goals of ongoing monitoring, reporting and evaluation of
state quitlines. Ideally, the CDC would replace the NQDW Services
Survey with data collected through NAQC’s annual survey to
reduce reporting burden on state quitline staff. At a minimum, we
recommend coordinating with NAQC on data collection to reduce
reporting burden.
We
would like to highlight several key points for consideration in
this review process:
Services
offered: NQDW data collection has not advanced with the changing
landscape of how states are providing services. Services offered
by state quitlines now include a variety of options (e.g. texting,
email, NRT starter kits, printed materials, web-based services),
yet the survey still asks about telephone counseling only. Because
of this, Minnesota has only been reporting on our Helpline
(telephone counseling) participants yet this only represents
approximately 12% of our enrollments. We recommend updating the
questions to reflect an expanded definition of quitline services
to allow states to report on all cessation services. This would
lead to a more accurate accounting of how state quitlines are
helping commercial tobacco users quit.
Use
of technology: In Minnesota and other states, participants can
enroll by phone or web. Currently the NQDW data request only
allows us to reflect phone enrollees, yet approximately 60% of our
participants enroll by web. Web enrollments have contributed
greatly to increased reach, and not including this entry method in
the survey limits states’ ability to provide a complete and
accurate picture of their quitline services.
Use
of NQDW data by CDC and others: The amount of data and specific
data elements reported on both the NQDW Quitline Services Survey
and the Quitline Intake and Administrative Intake Data should be
assessed given CDC’s specific monitoring, reporting and
evaluation needs and changes to data collection at the quitline
level. If the majority of states are no longer collecting certain
data elements and/or CDC no longer has a use for them, we
recommend removing them from the surveys. If feasible, we also
recommend evaluating use of NQDW data through the STATE system to
see whether these data are being used by others; if they are not,
or if only specific elements are being used, we recommend
considering whether the amount of data currently collected is
needed.
Response
burden: The current estimate provided for the Quitline Services
Survey is an average of 20 minutes per response. For Minnesota,
this estimate is fairly accurate when no database changes have
been made or additional questions added to the survey. When either
of these factors come into play, the time commitment increases
until these new items are successfully incorporated into the
process.
In
addition, there seem to be different models for gathering and
providing the requested data. In some cases, the quitline vendor
responds on behalf of the states while for others, evaluators or
state quitline staff are engaged. These different models require a
range of resources (both staff and financial). In Minnesota, we
are able to contract with our external evaluator to assist with
data reporting, but in other states, similar resources may not
exist potentially making it more time consuming for those not as
familiar with data to complete the NQDW. DHHS should take the
range of state quitlines’ capacity and resources into
account as part of this evaluation.
Reporting
accuracy: Given the nature of the data requested and the different
models for gathering and providing the requested data, it is
possible that states or their representatives are inconsistently
interpreting the requested items. Some of the questions leave room
for a wide range of interpretation. A quality check or quality
assurance process could contribute to increased validity and trust
in the accuracy and utility of the data.
Reporting
frequency: Given the project goals and how the data are used, we
feel that reporting data twice per year rather than quarterly
would reduce burden without compromising CDC’s goals. The
nature of quitline data is such that consistent patterns emerge
and receiving data every six months would likely not compromise
the utility of the information.
In
closing, we feel that data quality, utility and clarity continue
to be appropriate measures to drive the collection of data for the
NQDW. A review of the requested data elements and frequency with
these principles in mind would help streamline the request to best
reflect the current and future state of quitlines.
Thank
you for considering our recommendations. We would be happy to
answer any questions you might have related to this response.
Sincerely,
David J. Willoughby, M.A.
Chief Executive Officer ClearWay MinnesotaSM
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