The National Institutes of Health “Methods and Measurement in Sexual & Gender Minority Health Research: Identifying Research Opportunities”, 9538-9539 [2019-04790]

Agencies

• DEPARTMENT OF HEALTH AND HUMAN SERVICES
• National Institutes of Health

[Federal Register Volume 84, Number 51 (Friday, March 15, 2019)]
[Notices]
[Pages 9538-9539]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-04790]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health


The National Institutes of Health ``Methods and Measurement in 
Sexual & Gender Minority Health Research: Identifying Research 
Opportunities''

ACTION: Request for comments.

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SUMMARY: Sexual and gender minority (SGM) is an umbrella phrase that 
encompasses lesbian, gay, bisexual, and transgender populations as well 
as those whose sexual orientation, gender identity and expressions, or 
reproductive development varies from traditional, societal, cultural, 
or physiological norms. This includes Disorders or Differences in Sex 
Development (DSD), sometimes known as intersex.
    The Sexual & Gender Minority Research Office (SGMRO) at the 
National Institutes of Health (NIH) has developed the document 
``Methods and Measurement in Sexual & Gender Minority Health Research: 
Identifying Research Opportunities'' pertaining specifically and 
exclusively to methods and measurement research in SGM health research. 
Experts in the field identified research opportunities related to 
methods and measurement in SGM health research during a workshop held 
in the Spring of 2018. The document reflects the content of the 
discussion among participants at the Methods and Measurement in SGM 
Health Research Workshop and does not represent an official position of 
NIH or any other government agency. We would like to obtain comment on 
the specifics of this document to consider for the purposes of 
informing and enhancing its content.

DATES: To ensure consideration of your comments, responses must be 
received by April 15, 2019.

ADDRESSES: Responses to this notice must be submitted electronically by 
email to sgmhealthresearch@od.nih.gov. Please use the subject 
``Comments: Measurement.''

FOR FURTHER INFORMATION CONTACT: Dr. Karen Parker, Division of Program 
Coordination, Planning, and Strategic Initiatives, Office of the 
Director, NIH, Building 1, Room 257, 1 Center Drive,

[[Page 9539]]

Bethesda, MD 20892, Telephone: 301-451-2055, Email: 
karen.parker@nih.gov.

SUPPLEMENTARY INFORMATION: 

Background

    In 2015, the National Institutes of Health (NIH) established the 
Sexual & Gender Minority Research Office (SGMRO) in the Division of 
Program Coordination, Planning, and Strategic Initiatives in the Office 
of the Director. The role of the SGMRO is to: Coordinate sexual and 
gender minority (SGM) health research activities across NIH; represent 
NIH at conferences and events on trans-NIH activities focused on SGM 
research; coordinate and convene conferences and workshops to inform 
priority setting and research activities; collaborate with NIH 
Institutes and Centers on the development of SGM health research 
reports; manage information dissemination related to SGM research; and 
work with NIH Institutes and Centers to leverage resources and develop 
initiatives to support SGM health research.
    The 21st Century Cures Act, signed into law on December 13, 2016, 
included SGM-specific provisions, by amending the Public Health Service 
Act, SEC. 404N. [283] POPULATION FOCUSED RESEARCH. Those provisions are 
summarized as follows:
    ``The Director of the National Institutes of Health shall, as 
appropriate, encourage efforts to improve research related to the 
health of sexual and gender minority populations, including by: 
facilitating increased participation of sexual and gender minority 
populations in clinical research supported by the National Institutes 
of Health, and reporting on such participation, as applicable; 
facilitating the development of valid and reliable methods for research 
relevant to sexual and gender minority populations; and addressing 
methodological challenges.''
    As a result of the growing need to develop better measures and 
methods to accurately capture and understand the health of SGM 
populations, the SGMRO hosted a workshop to identify research 
opportunities in methods and measurement in SGM-related health 
research. The planning committee included both NIH staff and extramural 
researchers who designed the workshop agenda and developed a schema to 
guide the discussions.
    The workshop focused on three areas: Measurement of SGM status; 
measurement of related constructs; and sampling. Extramural researchers 
were invited who represented various research areas, stages of career, 
populations of interest, and disciplines.
    Community members, NIH staff, and other federal staff were also 
included. Discussions focused around varying concepts to consider under 
each of the domains identified by the planning committee; overarching 
themes of intersectionality, lifespan, culture, and historical context 
and cohort effects were considered throughout the discussions. The 
concepts for consideration are highlighted below:

I. Measurement of SGM Status

[cir] Sexual Orientation (identity, behavior, attraction)
[cir] Gender Identity (cisgender, transgender, gender nonconforming, 
non-binary)
[cir] Disorders or Differences of Sex Development/Intersex (medical 
condition at birth vs. self-identified)
[cir] Fluidity (identity across contexts, time, and developmental 
stage)
[cir] Assessment Modality (survey, report, collection from a provider, 
on the phone, internet, paper)
[cir] Clinical Settings

II. Measurement of Related Constructs

[cir] Stigma (structural, interpersonal, individual or internalized)
[cir] Coming Out/Disclosure Process
[cir] Family Relationships
[cir] Cultural Competence/Humility in the Healthcare and Research 
Settings (providers, facilities, etc.)

III. Sampling

[cir] Probability vs. Non-Probability Sampling
[cir] Sampling Across Demographics/Sub-populations
[cir] Small Sample Sizes

Information Requested

    This notice invites public comment on the proposed research needs 
and opportunities developed at the Methods and Measurement in Sexual 
and Gender Minority Health Research Workshop. To inform the final 
document, comment is requested on the following questions:
    (1) What are the most important and relevant methods and 
measurement-related research questions to members of the SGM community?
    (2) What are the key methods and measurement-related research 
questions missing from the research opportunities that should be 
included?
    Comments regarding this information collection are best assured of 
having their full effect if received within 30 days of the date of this 
publication. April 15, 2019.

General Information

    All of the following fields in the response are optional and 
voluntary. Any personal identifiers will be removed when responses are 
compiled. Proprietary, classified, confidential, or sensitive 
information should not be included in your response. This notice is for 
planning purposes only and is not a solicitation for applications or an 
obligation on the part of the United States (U.S.) government to 
provide support for any ideas identified in response to it. Please note 
that the U.S. government will not pay for the preparation of any 
comment submitted or for its use of that comment.
    Please indicate if you are one of the following: Grantee or other 
PI, administrator, student, institutional leader or institutional 
administrator, NIH employee, or other. If you are an investigator, 
please indicate your career level and main area of research interest, 
including whether the focus is clinical or basic. If you are a member 
of a particular advocacy or professional organization, please indicate 
the name and primary focus of the organization (e.g., research support, 
patient care, etc.) and whether you are responding on behalf of your 
organization (if yes, please indicate your position within the 
organization). Please provide your name and email address.
    Privacy Act Notification Statement: We are requesting your comments 
for Methods and Measurement in Sexual & Gender Minority Health 
Research: Developing a Research Agenda and Identifying Research 
Opportunities (https://dpcpsi.nih.gov/sites/default/files/MethodsMeasures_Paper_508_FV.pdf). The information you provide may be 
disclosed to NIH senior staff and those serving on the SGM Research 
Coordinating Committee and to contractors working on our behalf. 
Submission of this information is voluntary. However, the information 
you provide will help to categorize responses by scientific area of 
expertise, organizational entity or professional affiliation.
    Collection of this information is authorized under 42 U.S.C. 203, 
24 1, 2891-1 and 44 U.S.C. 310 I and Section 30l and 493 of the Public 
Health Service Act regarding the establishment of the National 
Institutes of Health, its general authority to conduct and fund 
research and to provide training assistance, and its general authority 
to maintain records in connection with these and its other functions.

    Dated: March 8, 2019.
Lawrence A. Tabak,
Deputy Director, National Institutes of Health.
[FR Doc. 2019-04790 Filed 3-14-19; 8:45 am]
 BILLING CODE 4140-01-P