[Federal Register Volume 88, Number 41 (Thursday, March 2, 2023)]
[Notices]
[Pages 13130-13131]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2023-04235]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Agency Information Collection Activities: Proposed Collection: 
Public Comment Request; Information Collection Request Title: Be The 
Match[supreg] Patient Support Center Survey

AGENCY: Health Resources and Services Administration (HRSA), Department 
of Health and Human Services.

ACTION: Notice.

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SUMMARY: In compliance with the requirement for opportunity for public 
comment on proposed data collection projects of the Paperwork Reduction 
Act of 1995, HRSA announces plans to submit an Information Collection 
Request (ICR), described below, to the Office of Management and Budget 
(OMB). Prior to submitting the ICR to OMB, HRSA seeks comments from the 
public regarding the burden estimate, below, or any other aspect of the 
ICR.

DATES: Comments on this ICR should be received no later than May 1, 
2023.

ADDRESSES: Submit your comments to [email protected] or by mail at: 
HRSA Information Collection Clearance Officer, Room 14N39, 5600 Fishers 
Lane, Rockville, MD 20857.

FOR FURTHER INFORMATION CONTACT: 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 Samantha Miller, 
the HRSA Information Collection Clearance Officer, at (301) 443-1984.

SUPPLEMENTARY INFORMATION: When submitting comments or requesting 
information, please include the ICR title for reference.
    Information Collection Request Title: Be The Match[supreg] Patient 
Support Center Survey, OMB No. 0906-0004-Revision.
    Abstract: The C.W. Bill Young Cell Transplantation Program was 
established by the Stem Cell Therapeutic and Research Act of 2005 
(Public Law [Pub. L.] 109-129) and was reauthorized in 2010 (Pub. L. 
111-264), 2015 (Pub. L. 114-104) and again in 2021 (Pub. L. 117-15). 
The C.W. Bill Young Cell Transplantation Program's Office of Patient 
Advocacy (OPA) is operated by the National Marrow Donor Program[supreg] 
(NMDP). Through OPA, NMDP provides navigation services, education 
resources and support to people in need of or who have received an 
allogeneic hematopoietic cell transplant (HCT). As the contractor for 
the OPA, NMDP is required to conduct surveys to evaluate patient 
satisfaction with the services provided. As such, NMDP will elicit 
feedback from HCT patients, caregivers, and family members who had 
contact with the NMDP/Be The Match[supreg] Patient Support Center (PSC) 
for service and support. The survey is administered through a web-based 
system. In addition to questions that measure satisfaction, the survey 
also includes demographic questions to determine representativeness of 
findings.
    Need and Proposed Use of the Information: HCT is a complex medical 
procedure that requires significant support before, during and after 
the procedure. Many patients experience barriers that impede access to 
HCT. Barriers to HCT-related care and educational information are 
multi-factorial. The NMDP/Be The Match PSC offers many programs and 
services to support patients, caregivers, and family members throughout 
their HCT journey. Feedback from recipients of NMDP services is 
essential to understand the changing needs for services and information 
as well as to demonstrate the effectiveness of existing services. The 
primary use for information gathered through the survey is to determine 
the helpfulness of participants' initial contact with the PSC patient 
navigators and to identify areas for improvement in the delivery of 
services. Patient navigators are trained

[[Page 13131]]

lay or licensed clinical patient navigators, who respond to requests 
for information and support. Program managers and NMDP leadership use 
this evaluation data to share patients' experiences as well as make 
program and resource allocation decisions.
    Web-based surveys will be administered to all participants 
(patients, caregivers, and family members) who have contact with the 
PSC. All participants for whom an email address is known will be 
invited to complete the survey online. Survey respondents will be 
notified via email invitation and in the survey instructions that 
participation is voluntary, and responses will be kept confidential. A 
follow-up invitation will be sent within 2 weeks to non-respondents.
    The survey will include these items to measure: (1) their 
experience, (2) if the contact helped the participant feel more 
confident in coping with treatment, (3) if the contact helped the 
participant feel more hopeful, (4) if the contact helped the 
participant feel less alone, (5) increased awareness of available 
resources, (6) if the contact helped the participant feel more informed 
about treatment options, (7) if their questions were answered, and (8) 
types of challenges faced by participant. The survey data will be 
analyzed quarterly and annually, and results will be shared with 
program managers. Feedback indicating a need for improvement will be 
reviewed by program managers biannually and implementation of resulting 
program changes or additions will be documented.
    Likely Respondents: Respondents will include patients, caregivers, 
and family members who have contact with the PSC via phone or email for 
HCT navigation services and support (advocacy). The decision to survey 
all participants was made based on the historically low response rate 
to this survey due to patients' frequent transitions in health status 
as well as transfer between home and the hospital for initial treatment 
and care for complications. Participants will receive the survey once 
in a 1-year cycle. If a participant contacts the PSC one or more years 
after the initial contact, they will receive a second survey. This is 
because we anticipate that the participants' needs will likely change 
during the time lapse.
    Burden Statement: Burden in this context means the time expended by 
persons to generate, maintain, retain, disclose, or provide the 
information requested. This includes the time needed to review 
instructions; to develop, acquire, install, and utilize technology and 
systems for the purpose of collecting, validating, and verifying 
information, processing and maintaining information, and disclosing and 
providing information; to train personnel and to be able to respond to 
a collection of information; to search data sources; to complete and 
review the collection of information; and to transmit or otherwise 
disclose the information. The total annual burden hours estimated for 
this ICR are summarized in the table below.
    The total respondent burden for the customer satisfaction surveys 
is estimated to be 153 hours. HRSA expects a total of 900 respondents 
to complete the Be The Match[supreg] Patient Support Center Survey.

                                     Total Estimated Annualized Burden Hours
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                                                     Number of                    Average burden
            Form name                Number of     responses per       Total       per response    Total burden
                                    respondents     respondent       responses      (in hours)         hours
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Be The Match[supreg] Patient                 900               1             900            0.17             153
 Support Center Survey..........
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    Total.......................             900               1             900            0.17             153
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    HRSA specifically requests comments on (1) the necessity and 
utility of the proposed information collection for the proper 
performance of the agency's functions; (2) the accuracy of the 
estimated burden; (3) ways to enhance the quality, utility, and clarity 
of the information to be collected; and (4) the use of automated 
collection techniques or other forms of information technology to 
minimize the information collection burden.

Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2023-04235 Filed 3-1-23; 8:45 am]
BILLING CODE 4165-15-P