[Federal Register Volume 77, Number 105 (Thursday, May 31, 2012)]
[Notices]
[Pages 32127-32128]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2012-13124]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Agency Information Collection Activities: Proposed Collection: 
Comment Request

    In compliance with the requirement for opportunity for public 
comment on proposed data collection projects (section 3506(c) (2) (A) 
of Title 44, United States Code, as amended by the Paperwork Reduction 
Act of 1995, Pub. L. 104-13), the Health Resources and Services 
Administration (HRSA) publishes periodic summaries of proposed projects 
being developed for submission to the Office of Management and Budget 
(OMB) under the Paperwork Reduction Act of 1995. To request more 
information on the proposed project or to obtain a copy of the data 
collection plans and draft instruments, email [email protected] or 
call the HRSA Reports Clearance Officer at (301) 443-1984.
    Comments are invited on: (a) The proposed collection of information 
for the proper performance of the functions of the Agency; (b) the 
accuracy of the Agency's estimate of the burden of the proposed 
collection of information; (c) ways to enhance the quality, utility, 
and clarity of the information to be collected; and (d) ways to 
minimize the burden of the collection of information on respondents, 
including through the use of automated collection techniques or other 
forms of information technology.

Proposed Project: Sickle Cell Disease Treatment Demonstration Program--
Quality Improvement Data Collection for the Hemoglobinopathy Learning 
Collaborative (OMB No. 0915-xxxx)--[New]

    Background: In response to the growing need for resources devoted 
to sickle cell disease and other hemoglobinopathies, the United States 
Congress, under Section 712 of the American Jobs Creation Act of 2004 
(Pub. L. 108-357), authorized a demonstration program for the 
prevention and treatment of sickle cell disease (SCD) to be 
administered through the Bureau of Primary Health Care and the Maternal 
and Child Health Bureau (MCHB) of the Health Resources and Services 
Administration (HRSA) in the U.S. Department of Health and Human 
Services. The program is known as the Sickle Cell Disease Treatment 
Demonstration Program (SCDTDP). The SCDTDP is designed to improve 
access to services for individuals with sickle cell disease, improve 
and expand patient and provider education, and improve and expand the 
continuity and coordination of service delivery for individuals with 
sickle cell disease and sickle cell trait.
    To achieve the goals and objectives of the program, the 
Hemoglobinopathy Learning Collaborative (HLC) uses a process known as 
the Model for Improvement, a widely used approach to quality 
improvement (QI) in healthcare settings. The Model for Improvement 
utilizes a structured process that asks grantee teams to build on small 
tests of change in their healthcare setting, while providing monthly 
reporting on measurements. The proposed QI data collection and 
reporting system is an integral component of the HLC.
    Purpose: The purpose of the proposed QI Data Collection strategy is 
to implement a system to monitor the progress of MCHB-funded activities 
in improving care and health outcomes for individuals living with 
sickle cell disease/trait and meeting the goals of the SCDTDP. Each 
grantee team will be asked to report on a core set of measures related 
to quality improvement for hemoglobinopathies. Through an evidence-
based process, a bank of QI measures within each grantee network has 
been developed to assess health care utilization of the SCD population 
as well as several aspects of the system of care.
    The QI Data Collection strategy will provide an effective and 
efficient mechanism to do the following: (1) Assess the services 
provided by grantees under the SCDTDP and monitor and drive improvement 
on quality measures; (2) collect, coordinate, and distribute data, best 
practices, and findings from network sites; (3) refine a common model 
protocol regarding the prevention and treatment of sickle cell disease; 
(4) examine/address barriers that individuals and families living with 
sickle cell disease face when accessing quality health care and health 
education; (5) evaluate the grantees' performance in meeting the 
objectives of the SCDTDP; and (6) provide HRSA/Congress information on 
the overall progress of the program.
    Respondents: Grantees funded by HRSA under the SCDTDP will be the 
respondents for this data collection activity. Each month, SCDTDP teams 
will complete up to three data collection forms for 20 patients with 
SCD or sickle cell trait who were seen in their network that month. The 
Participant Profile form will collect demographic and basic health 
information. The Acute Care Visit and Ambulatory Care Visit forms will 
assess care in acute and ambulatory care settings, respectively.
    All information will be collected via chart review. Data will be 
entered directly into a secure web-based data collection tool, called 
Research Electronic Data Capture (REDCap). The data entered into REDCap 
will be analyzed via a custom measurement generator that will calculate 
and export the QI measures for viewing by grantee teams and the 
National Coordinating Center.

[[Page 32128]]

    The annual estimate of burden is as follows:

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                                     Number of     Responses per       Total         Hours per     Total burden
         Questionnaires             respondents     respondent       responses       response          hours
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Participant Profile Form........               9             240           2,160             .08             173
Acute Care Visit Form...........               9             240           2,160             .30             648
Ambulatory Care Visit Form......               9             240           2,160             .30             648
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    Total.......................              27  ..............           6,480  ..............           1,469
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    Email comments to [email protected] or mail the HRSA Reports 
Clearance Officer, Room 10-29, Parklawn Building, 5600 Fishers Lane, 
Rockville, MD 20857. Written comments should be received within 60 days 
of this notice.

    Dated: May 24, 2012.
Reva Harris,
Acting Director, Division of Policy and Information Coordination.
[FR Doc. 2012-13124 Filed 5-30-12; 8:45 am]
BILLING CODE 4165-15-P