Notice2023-04235
Agency Information Collection Activities: Proposed Collection: Public Comment Request; Information Collection Request Title: Be The Match® Patient Support Center Survey
Primary source
Metadata and text below are from the Federal Register, a public-domain U.S. government work. Always verify the official published version before relying on it for any legal matter.
Published
March 2, 2023
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
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.
Full Text
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<title>Federal Register, Volume 88 Issue 41 (Thursday, March 2, 2023)</title>
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<body><pre>[Federal Register Volume 88, Number 41 (Thursday, March 2, 2023)]
[Notices]
[Pages 13130-13131]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[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 <a href="/cdn-cgi/l/email-protection#c9b9a8b9acbbbea6bba289a1bbbaa8e7aea6bf"><span class="__cf_email__" data-cfemail="becedfcedbccc9d1ccd5fed6cccddf90d9d1c8">[email protected]</span></a> 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 <a href="/cdn-cgi/l/email-protection#413120312433362e332a01293332206f262e37"><span class="__cf_email__" data-cfemail="0d7d6c7d687f7a627f664d657f7e6c236a627b">[email protected]</span></a> 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
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