The
commenter provided feedback on quitline data and quitline data
collection including questions asked in the survey.
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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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In response to this and other
comments suggesting that CDC reduce burden on state quitline
staff, CDC has decided to reduce the frequency of Services Survey
data collection from quarterly to semiannually.
CDC
understands that NAQC conducts a survey of state quitlines;
however, NAQC’s data is collected annually and based on
states’ fiscal years. CDC needs to have individual-level
intake data quarterly and services data semiannually based on
standard calendar periods to evaluate interventions (e.g. CDC’s
Tips® campaign)
that has impacted quitline utilization. In addition, the data
submitted to NQDW undergo a quality assurance process to maintain
accuracy. For these reasons, NAQC’s data do not entirely
meet CDC’s needs. It is essential for CDC to have direct
control and ready access to these data because CDC provides
substantial funding to support state quitline activities and is
accountable for the outcomes of these activities. CDC plans to
continue conversations with NAQC to streamline data collection and
reporting.
CDC
understands that quitlines now offer many non-phone based
cessation services beyond telephone counseling. However, not all
the states have adopted these technologies and even for the states
that offer these non-phone based cessation services, the majority
of the quitline registrants call for telephone counseling.
CDC
is currently working to determine the best way to update the NQDW
information collection for those users who use different pathways
such as web, texting or an app. We agree it will reflect the
changing landscape of quitline services and their users’
various modes of accessing these services. CDC plans to work to
incorporate these different pathways and will plan to submit a
request to OMB to do so through the appropriate mechanism.
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The
commenter provided feedback on the Seven-Month Follow-up
Questionnaire.
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January
7, 2019
Jeffrey
M. Zirger Acting Lead, Information Collection Review Office
Centers for Disease Control and Prevention 1600 Clifton Road NE,
MS-D74 Atlanta, Georgia 30329
Re:
Request for Comment on the National Quitline Data Warehouse
(Docket No. CDC-2018-0097)
Dear
Mr. Zirger:
The
American Lung Association appreciates the opportunity to submit
comments in response to the Centers for Disease Control and
Prevention’s (CDC) request to assess the information
collection project titled “National Quitline Data Warehouse”
(NQDW).
The
American Lung Association is the oldest voluntary public health
organization in the United States and is committed to eliminating
tobacco use and tobacco-related disease. Across all 50 states and
the District of Columbia, Lung Association volunteers and staff
help smokers quit through health education programs and through
policy changes. Lung Association staff have also served as tobacco
cessation subject matter experts at national conferences and CDC
meetings.
The
American Lung Association has decades of experience with providing
tobacco cessation services. The Lung Association’s Lung
Helpline is staffed by nurses, respiratory therapists and smoking
cessation counselors and has operated the Illinois Tobacco
Quitline since 2001. More than one million Americans have quit
smoking using the American Lung Association’s Freedom From
Smoking program. The program, often referred to as the
goldstandard for tobacco cessation, is available as an in-person
group clinic, a self-help guide, by telephone and online in our
newest option, Freedom From Smoking Plus.
According
to the U.S. Surgeon General, almost half a million Americans die
each year from a tobacco related illness.1 While the smoking rate
among the general population is falling, 14 percent of adults in
the United States still smoke.2 Among all U.S. adult cigarette
smokers in 2015, nearly seven out of ten (68% ) reported wanting
to quit smoking completely, but fewer than one in ten quit
successfully.3
Unfortunately,
on average, it takes a person more than eight quit attempts to
quit for good.4 The Lung Association is committed to helping all
smokers quit by ensuring they have access to cessation treatment,
including phone counseling and quitlines.
The
Lung Association supports the CDC collecting the core set of
information through the National Quitline Data Warehouse (NQDW).
Data from the NQDW has been used to measure the number of tobacco
users being served by state quitlines, demonstrate the role
quitlines play in promoting tobacco cessation, and improve
quitline operations, service quality and access. The data also
helps the CDC, state and various other stakeholders improve
states’ understanding and utilization of state-specific data
and allow for comparisons between a single state’s data and
national data.
Additionally,
the individual-level data collected helps determine which key
subgroups of tobacco users are contacting their state quitlines
and highlight where improvements can be made to ensure priority
populations are being reached. Priority populations are identified
as groups that bear the burden of significant tobacco-related
disparities. In this instance, priority populations are identified
as: African American/black, American Indian/Alaska Native, Asian
American/Pacific Islander, Hispanic/Latino, Lesbian, Gay, Bisexual
and Transgender, and Low Socioeconomic Status.
With
respect to the NQDW Seven-Month Follow-up Questionnaire, the Lung
Association recommends that the CDC administer it not only to
tobacco users who received services from the Asian Smokers
Quitline, but also to all other respondents. Consistent data
collection will help in providing more accurate statistical
analyses for researchers and is more reliable than estimations. In
addition to the seven-month follow up, the American Lung
Association recommends that the CDC administer follow-ups at one
month and three months. Follow up assessments at these time
intervals will provide opportunities to intervene early in the
process and assist individuals that have relapsed.
Quitting
smoking is the single most important step an individual can take
to improve their health, but it is very difficult for most people.
The state quitlines are an effective tool in helping provide
resources, medications and counseling to tobacco users who contact
them. The Lung Association urges the CDC to continue and expand
data collection through the NQDW. The NQDW serves as an important
resource tool in helping reduce the prevalence of smoking in the
United States. The American Lung Association appreciates the
opportunity to provide comment and looks forward to continuing to
work with the CDC on its cessation efforts.
Sincerely,
Deborah
P. Brown Chief Mission Officer
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Thank you for your comment.
CDC does not have plans to
collect follow up data for now. Collecting follow up data is
costly for states and will increase their burden significantly.
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