Notice2026-19883
Agency Information Collection Activities: Submission to OMB for Review and Approval; Public Comment Request; National Marrow Donor Program 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
September 29, 2026
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 91 Issue 187 (Tuesday, September 29, 2026)</title>
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[Federal Register Volume 91, Number 187 (Tuesday, September 29, 2026)]
[Notices]
[Pages 61413-61415]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2026-19883]
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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; National Marrow Donor
Program 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 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 October
29, 2026.
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#b7c7d6c7d2c5c0d8c5dcf7dfc5c4d699d0d8c1"><span class="__cf_email__" data-cfemail="b6c6d7c6d3c4c1d9c4ddf6dec4c5d798d1d9c0">[email protected]</span></a> or call
(301) 443-9094.
SUPPLEMENTARY INFORMATION:
Information Collection Request Title: National Marrow Donor Program
Patient Support Center Survey, OMB No. 0906-0004--Revision.
Abstract: The C.W. Bill Young Cell Transplantation Program
(CWBYCTP) 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 CWBYCTP's
[[Page 61414]]
Office of Patient Advocacy (OPA) is operated by the National Marrow
Donor Program, d.b.a. NMDP\SM\. Through the OPA, NMDP\SM\ provides
navigation services, educational 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\SM\ is required
to conduct surveys to evaluate patient satisfaction with the services
provided. Accordingly, NMDP\SM\ will solicit feedback from HCT
patients, caregivers, and family members who have contacted the
NMDP\SM\ Patient Support Center (PSC). The survey is administered
through a web-based system. In addition to questions that measure
satisfaction, the survey also includes demographic questions to assess
the representativeness of the findings.
A 60-day Notice was published in the Federal Register on July 1,
2026, vol. 91, No. 125, pp. 40004-40005. There were two public
comments. The first commenter suggested that, for surveys administered
repeatedly over time, previously submitted information be pre-populated
to reduce respondent burden and improve the user experience. HRSA
reviewed the comment and did not adopt this change, because this survey
is not designed to collect longitudinal data. Although pre-populated
information may reduce burden in some post-transplant follow-up
contexts, this survey is specific to respondents who contact the
NMDP\SM\ PSC immediately before and after transplant, generally within
a 12-month period. Respondents generally receive the survey only once
within that 12-month period after the first interaction. A subsequent
survey is sent only if they have another contact with the NMDP\SM\ PSC
after a 12-month period. Pre-populating the survey with prior responses
would not be relevant to a subsequent survey because each survey
measures satisfaction with a specific interaction. The second commenter
recommended administering the survey in alternate formats (such as
Short Message Service) and also suggested that survey response data
should be presented in a way that clearly delineates the proportion of
individuals served by the NMDP\SM\ PSC who received the survey, those
that did not receive the survey because no email address was provided,
those that responded to the survey, and those that received the survey
but did not respond. HRSA reviewed this comment and determined that
suggestions related to the presentation and interpretation of survey
data are consistent with existing analysis and evaluation methodologies
for this survey including delineation of surveyed and non-surveyed
groups within the total population. HRSA also determined that the use
of Short Message Service or other technologies for survey
administration must be reviewed further for cost and implementation
considerations. HRSA will complete this review and implement changes,
if appropriate, by December 31, 2028. Therefore, no changes were made
to the information collection in response to the two comments received.
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
multifactorial. The NMDP\SM\ PSC offers programs and services to
support patients, caregivers, and family members throughout their HCT
journey. Feedback from recipients of NMDP\SM\ services is essential to
understand the changing needs for services and information, as well as
to assess the effectiveness of existing services. The primary use of
information gathered through the survey is to assess the helpfulness of
participants' initial contact with PSC patient navigators and to
identify areas for improvement in service delivery. Patient navigators
are nurses or oncology certified navigators, who respond to requests
for information and support. Program managers and NMDP\SM\ leadership
use this evaluation data to understand patient experiences and inform
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 that responses will be kept
confidential. A follow-up invitation will be sent to non-respondents
within 2 weeks.
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 semiannually and implementation of
resulting program changes or additions will be documented.
HRSA is revising some of the survey questions and phrasing to
improve clarity, without changing the intent of the question. One
response option has been added to the question about the respondent's
education level. There are no changes to the instructions, frequency of
collection, or use of the information.
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 transfers 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 1 or
more years after the initial contact, the participants will receive a
second survey. This is because participants' needs may change over
time.
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 survey is
estimated to be 75 hours. HRSA expects a total of 1,000 respondents to
complete the NMDP\SM\ PSC Survey with an estimated 4.5 minutes to
complete each survey.
[[Page 61415]]
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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National Marrow Donor Program 1,000 1 1,000 0.075 75
Patient Support Center Survey.
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Total...................... 1,000 1 1,000 0.075 75
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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 burden of the information collection.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2026-19883 Filed 9-28-26; 8:45 am]
BILLING CODE 4165-15-P
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