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Developing Informed-consent Standards through a COmmunity-driven deliberative democracy process (DISCO) for Data to Suppression (D2S)

Award Number: R01MH125735
ORGANIZATION: NATIONAL INSTITUTE OF MENTAL HEALTH
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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ABSTRACT We will use a community-based, participatory framework to create ethical guidelines for HIV information sharing. The proposed project builds on the “Data to Suppression” (D2S) approach in the parent grant. D2S is a capacity building initiative, of which a central component is surveillance-based, viral suppression reporting on clients in housing and behavioral health programs. However, the D2S project was developed without input from clients who are served by the initiative. Many people with HIV (PWH) may not be aware that their HIV laboratory test results are being shared, with whom their data are being shared, or what regulations exist to govern information sharing between public health departments and health service providers. Developing a more client-centered data sharing process can foster better public trust and engagement with this type of public health initiative. It can also serve as a model for other jurisdictions to implement similar processes. In order to develop an ethical consent process for data sharing, it is essential to obtain community feedback on policies governing how data may be shared and used. In this supplemental project, we will hold a two-day, “deliberative democracy” session among 40 clients who receive Ryan White Part A (RWPA) services to identify community values and priorities around HIV data sharing for public health interventions. We will develop recommendations for an informed consent and data sharing protocol for the D2S initiative. During the first session, we will convene information sessions on current New York City Department of Health and Mental Hygiene data sharing policies and host small group deliberation sessions where clients can propose policies for ethical data sharing. During the second session, we will vote to ratify proposals and a consent process for data sharing. The session will be evaluated using pre- and post- study questionnaires, qualitative analysis of small group sessions, and through ratification of finalized recommendations and policies for HIV-related information sharing. The work in this supplement will challenge top-down approaches to health intervention planning and strive toward a public health framework that is truly community-driven.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2024 ( Subtotal = $0 )
2024	2023	RESEARCH FOUNDATION OF THE CITY UNIVERSITY OF NEW YORK	55 W 125TH ST FL 7	NEW YORK	NY	10027	NEW YORK	USA	Mental Health Research Grants	000	3	10/26/2023	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $858,688 )
2023	2023	RESEARCH FOUNDATION OF THE CITY UNIVERSITY OF NEW YORK	55 WEST 125TH ST FL 7	NEW YORK	NY	10027	NEW YORK	USA	Mental Health Research Grants	001	3	9/1/2023	SUPPLEMENT FOR EXPANSION	$264,911
2023	2023	RESEARCH FOUNDATION OF THE CITY UNIVERSITY OF NEW YORK	55 WEST 125TH ST FL 7	NEW YORK	NY	10027	NEW YORK	USA	Mental Health Research Grants	000	3	5/24/2023	NON-COMPETING CONTINUATION	$593,777
														Subtotal = $858,688

Issue Date FY: 2022 ( Subtotal = $593,786 )
2022	2022	RESEARCH FOUNDATION OF THE CITY UNIVERSITY OF NEW YORK	55 WEST 125TH ST FL 7	NEW YORK	NY	10027	NEW YORK	USA	Mental Health Research Grants	000	2	4/28/2022	NON-COMPETING CONTINUATION	$593,786
														Subtotal = $593,786

Issue Date FY: 2021 ( Subtotal = $663,231 )
2021	2021	RESEARCH FOUNDATION OF THE CITY UNIVERSITY OF NEW YORK	55 WEST 125TH ST FL 7	NEW YORK	NY	10027	NEW YORK	USA	Mental Health Research Grants	000	1	6/25/2021	NEW	$663,231
														Subtotal = $663,231

Grand Total All Awards = $2,115,705

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Developing Informed-consent Standards through a COmmunity-driven deliberative democracy process (DISCO) for Data to Suppression (D2S)

Award Number: R01MH125735

ORGANIZATION: NATIONAL INSTITUTE OF MENTAL HEALTH

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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