[Federal Register Volume 85, Number 167 (Thursday, August 27, 2020)]
[Notices]
[Pages 53009-53011]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2020-18895]


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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 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 September 
28, 2020.

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 Lisa Wright-Solomon, the 
HRSA Information Collection Clearance Officer at [email protected] or 
call (301) 443-1984.

SUPPLEMENTARY INFORMATION: 

[[Page 53010]]

    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 
(Program) was established by the Stem Cell Therapeutic and Research Act 
of 2005 (Public Law 109-129), as amended. 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.
    A 60-day notice published in the Federal Register on May 4, 2020, 
Vol. 85, No. 86; pp. 26483-84. There were no public comments.
    The number of respondents figure published in the 60-day notice 
reflected the total surveys to be distributed and not the total 
respondents. This decreases the number of respondents from 4,000 to 
1,320, and the burden hours from 680 to 220. The NMDP used new data to 
more accurately assess response rates based on past experience. NMDP 
also simplified its survey tool and aligned key metrics asked in the 
survey (Net Promoter Score) with industry evaluation standards and best 
practices to enhance the quality, utility, and clarity of the 
information collected. The NMDP has also minimized the collection 
burden by using the Qualtrics software platform to transmit the surveys 
and automated reminders.
    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 
decisions (by program managers and leadership) and resource allocation 
decisions (by HRSA).
    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 
versions.
    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) if the contact 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  response    Total  burden
                                                                       respondents       rspondent        responses        (in hours)         hours
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Be The Match[supreg] Patient Services Survey.......................           1,320                1            1,320           0.167*            220**
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* Decreased from .25 average burden per response as published in the May 4, 2020 60-day FRN.
** Decreased from 680 total burden hours as published in the May 4, 2020 60-day FRN due to a reduction in the estimated number of respondents.


[[Page 53011]]

    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. 2020-18895 Filed 8-26-20; 8:45 am]
BILLING CODE 4165-15-P