Notice2023-12666
Agency Information Collection Activities: Submission to OMB for Review and Approval; Public Comment Request; Be The Match® Patient Support Center Survey-Revision
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
June 14, 2023
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
In compliance with the Paperwork Reduction Act of 1995, HRSA submitted an Information Collection Request (ICR) to the Office of Management and Budget (OMB) for review and approval. Comments submitted during the first public review of this ICR will be provided to OMB. OMB will accept further comments from the public during the review and approval period. OMB may act on HRSA's ICR only after the 30-day comment period for this notice has closed.
Full Text
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<title>Federal Register, Volume 88 Issue 114 (Wednesday, June 14, 2023)</title>
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[Federal Register Volume 88, Number 114 (Wednesday, June 14, 2023)]
[Notices]
[Pages 38872-38873]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2023-12666]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Agency Information Collection Activities: Submission to OMB for
Review and Approval; Public Comment Request; Be The Match[supreg]
Patient Support Center Survey--Revision
AGENCY: Health Resources and Services Administration (HRSA), Department
of Health and Human Services.
ACTION: Notice.
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SUMMARY: In compliance with the Paperwork Reduction Act of 1995, HRSA
submitted an Information Collection Request (ICR) to the Office of
Management and Budget (OMB) for review and approval. Comments submitted
during the first public review of this ICR will be provided to OMB. OMB
will accept further comments from the public during the review and
approval period. OMB may act on HRSA's ICR only after the 30-day
comment period for this notice has closed.
DATES: Comments on this ICR should be received no later than July 14,
2023.
ADDRESSES: Written comments and recommendations for the proposed
information collection should be sent within 30 days of publication of
this notice to <a href="http://www.reginfo.gov/public/do/PRAMain">www.reginfo.gov/public/do/PRAMain</a>. Find this particular
information collection by selecting ``Currently under Review--Open for
Public Comments'' or by using the search function.
FOR FURTHER INFORMATION CONTACT: To request a copy of the clearance
requests submitted to OMB for review, email Samantha Miller, the HRSA
Information Collection Clearance Officer, at <a href="/cdn-cgi/l/email-protection#4636273623343129342d062e34352768212930"><span class="__cf_email__" data-cfemail="1b6b7a6b7e696c7469705b7369687a357c746d">[email protected]</span></a> or call
(301) 443-3983.
SUPPLEMENTARY INFORMATION:
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 (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 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 (allo-HCT). As the contractor for 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 the representativeness of
findings.
A 60-day notice was published in the Federal Register on March 2,
2023, vol. 88, No. 41; pp. 13130-31. There were no public comments.
Need and Proposed Use of the Information: HCT is a complex medical
[[Page 38873]]
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 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 the 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 all patients,
caregivers, and family members who have contact with the Patient
Support Center 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 (~20 percent) 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 Patient Support Center one
or more years after the initial contact, they will receive a second
survey. This is because it is anticipated 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.
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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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.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2023-12666 Filed 6-13-23; 8:45 am]
BILLING CODE 4165-15-P
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