[Federal Register Volume 85, Number 86 (Monday, May 4, 2020)]
[Notices]
[Pages 26483-26484]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2020-09417]


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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; OMB No. 0906-0004--
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 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 July 6, 
2020.

ADDRESSES: Submit your comments to [email protected].

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 Lisa Wright-
Solomon, 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.

[[Page 26484]]

    Abstract: The C.W. Bill Young Cell Transplantation Program 
(Program) was established by the Stem Cell Therapeutic and Research Act 
of 2005 (Pub. L. 109-129) and was reauthorized in 2015 (Pub. L. 114-
104). The Program's Office of Patient Advocacy is operated by the 
National Marrow Donor Program[supreg] (NMDP)/Be The Match[supreg]). 
NMDP/Be The Match[supreg] has specific requirements under its HRSA 
contract to conduct surveys to assess patient satisfaction. As such, 
NMDP/Be The Match[supreg] will elicit feedback from marrow and cord 
blood transplant patients, caregivers, and family members who had 
contact with the Be The Match[supreg] Patient Support Center for 
navigation services, educational information, and support. The survey 
also includes demographic questions to determine the representativeness 
of findings. The objectives of the survey are to: (1) Determine the 
level of satisfaction with existing services of the Patient Support 
Center and (2) determine areas for improvement as well as opportunities 
for the development of new programs and services.
    Need and Proposed Use of the Information: Barriers restricting 
access to transplant-related care and educational information are 
multi-factorial. Feedback from participants 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 Be The Match[supreg] Blood 
and Marrow Transplant (BMT) Navigators and to identify areas for 
improvement in the delivery of services. The BMT Navigators are 
Certified Oncology Patients or Nurse Navigators, who respond to 
requests for information and support. Stakeholders (e.g., participants, 
program managers, Be The Match[supreg] leadership, and HRSA) use this 
evaluation data to share patients' experiences as well as make program 
(by program managers and leadership) and resource allocation (by HRSA) 
decisions.
    Online and paper-based surveys will be administered to all 
participants (patients, caregivers, and family members) who have 
contact with the Be The Match[supreg] Patient Support Center. All 
participants that provided an email address will be invited to complete 
the survey online. All other participants will be mailed a survey with 
a pre-paid reply envelope. Survey respondents will be notified via 
email and cover letter and informed in the survey instructions that 
participation is voluntary, and responses will be kept confidential. A 
follow-up notification will be sent within two (2) weeks to non-
respondents. The survey will be available in English and Spanish 
languages.
    The survey will measure: (1) Overall satisfaction; (2) if the 
contact helped the participant feel more confident in coping with the 
area of concern regarding the call; (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 participant's questions were answered 
through contact with the Be The Match[supreg] Patient Support Center, 
and (8) types of challenges faced by participant. The survey data will 
be analyzed quarterly and rolled up for an annualized analysis. The 
results of the analyses will be shared with program managers and HRSA. 
Feedback indicating a need for improvement will be reviewed by program 
managers biannually, and implementation of results, program changes, or 
additions will be documented.
    Proposed changes to the survey instrument include minor changes to 
selected questions and a reduction in the overall number of questions. 
The estimated amount of respondents will increase as it will be easier 
for them to complete the survey online. As a result of fewer questions 
along with the addition of an online platform, the respondent's burden 
will decrease.
    Likely Respondents: Respondents will include all patients, 
caregivers, and family members who have contact with Be The 
Match[supreg] Patient Services Coordinators via phone or email for 
transplant navigation services and support. The decision to survey all 
participants was made based on historical evidence of patients' 
unavailability due to frequent transitions in health status.
    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 as well as 
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 respondent   Total burden
                                    respondents     respondent       responses      (in hours)         hours
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Be The Match[supreg] Patient               4,000               1           4,000          * 0.17          ** 680
 Support Center Survey..........
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* Decreased from .25 burden per respondent.
** Increased from 105 hours but due to an almost tenfold increase in number of respondents 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. 2020-09417 Filed 5-1-20; 8:45 am]
BILLING CODE 4165-15-P