[Federal Register Volume 88, Number 114 (Wednesday, June 14, 2023)]
[Notices]
[Pages 38872-38873]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[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 www.reginfo.gov/public/do/PRAMain. 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 [email protected] 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