NIH All of Us Research Program Partnership

NIH All of Us Research Program Partnership


Overview
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Introduction

This site is designed to provide publicly available information about the partnership between NNLM and All of Us to assist in preparing the grant application for the Network of the National Library of Medicine (NNLM) All of Us Program Center(link is external) (U24) cooperative agreement that posted on July 12, 2021.

The NNLM All of Us National Program Center (NAPC) will serve as the coordinating center for the engagement, programs, partnerships, activities, and training offered by NNLM in support of the All of Us Research Program. The Center will continue to improve and innovate in two main functional areas: Training and Education and Community Engagement. These two functional areas collaborate, coordinate, and cooperate to design, deliver, report, and evaluate innovative, responsive, and effective programs and services. They also work together to increase awareness about the NIH All of Us Research Program and to improve the health, digital, and related literacy skills that allow the general public to participate in long-term clinical research programs. 

Background

In September 2017 the National Library of Medicine initiated a 3-year pilot partnership with the NIH All of Us Research Program(link is external) for the program’s community engagement and training platform through the Network of the National Library of Medicine (NNLM) UG4 cooperative agreement awards. The pilot program created the NNLM All of Us Community Program consisting of two associated Centers: Training and Education Center (TEC) and the Community Engagement Center (CEC). 

The focus of the Community Engagement Center (CEC) is to engage public libraries in health literacy initiatives that raise awareness of and interest in All of Us across the United States, including hosting the All of Us Journey. This includes engagement that can be accomplished directly (e.g., subawards to public libraries) and  indirectly (e.g.,  funding community-based organizations and Area Health Education Centers to work in libraries, innovative information access, and working through local, state, and national library organizations, etc.). An important emphasis of CEC’s work is to support engagement with underrepresented biomedical research (UBR) populations through libraries within each region and leveraging TEC resources. The CEC will be involved in supporting and further developing the NNLM All of Us Community Engagement Network (CEN) which provided 1,315 events reaching over 40,000 participants in project years 1-3.

The NNLM All of Us Training and Education Center (TEC) develops and houses training and educational content for and about the All of Us Research Program, supporting all program activities including community engagement. As the repository for All of Us educational content, the TEC leverages the NNLM’s existing Learning Management System (LMS) maintained by the NNLM Web Services Office (NWSO), instructional support resources of the NNLM Training Office (NTO), and the evaluation support of the NNLM Evaluation Center (NEC). The TEC provides All of Us with a Training and Education Platform (TEP) which has over 1,200+ users, with 1,600 course completions, and 11 classes for the All of Us program.

Based on the results and impact of NNLM pilot activities, a funded extension was provided to the current RML awardees to continue the work of the TEC and the CEC from May 1, 2021 to April 30, 2022. All of Us has agreed to continue funding the NNLM TEC and CEC for 2022-2026. 

Key reports:

U24 2021-2026

The new U24 for a single NNLM All of Us National Program Center draws together many discussions, lessons learned, and aspirations of the NNLM All of Us National Program that have occurred over the 4+ year history. The NNLM All of Us National  Program Center will increase efficiency, eliminate redundancies in engagement, programs and activities, and training, offer cost-savings in management and shared resources, ensure close coordination of all program activities, and respond quickly when the NIH All of Us Research Program needs to make changes.

The program will continue to offer two main functions: those formerly carried out by the Training and Education Center (TEC) and the Community Engagement Center (CEC). However, the program will be renamed to reflect a single Center with two components working together.

The new NNLM All of Us National Program Center will continue serving as the coordinating center for the NNLM’s All of Us community engagement programs. The Center will also continue to support All of Us with a Training and Education Platform. The National Program Center will continue to partner with NNLM and NLM for community engagement and educational programs. The new U24 mechanism will bring new approaches, perspectives, methodologies, and expertise in community engagement and health equity to the NNLM.

A New Vision for Community Programming

The new vision for community planning is a blend of human-centered design and community-based participatory research methods to create a program that is centered in user needs, uses demonstrated evidence-based and evidence-informed methods, and allows learning design and community engagement to cohesively work within the National Program Center.

The community engagement component provides engagement and connections in public libraries, community-based organizations, All of Us Engagement Ecosystem partners, and national library organizations.

The training and education component provides excellence in instructional design, training delivery, and conceptualizing and launching innovative programs and activities.

The NNLM Evaluation Center, Training Office, and Web Services Office provide needed support to trainings, programs, and services. In the next cycle of funding, the National Program Center and the Offices and Center will work collaboratively in a new vision for community programming.

The National Program Center will continue to provide engagement and educational activities that contribute to an individual’s or community’s participation in research. Each project, program, event, engagement, or evaluation will need to align with at least one of five (5) Focus Areas when raising awareness about All of Us:

  • Health literacy
  • Digital literacy
  • Precision medicine
  • Diversity in biomedical research 
  • Research literacy (includes citizen science) 

 

myself and my community graphic.png

 

Diversity as the keystone of the NNLM All of Us National Program
To support the All of Us mission to provide diverse and equitable participation in research studies, NNLM continues to support engagement with underrepresented biomedical research (UBR) populations through public libraries and community-based organizations across the US. Working with and through Minority Serving Institutions (MSIs) and community-based health programs is encouraged. Work with All of Us consortia members to accomplish program goals will continue. The National Program Center will ensure that funded projects and programs are aware, demonstrate, and provide culturally and linguistically humble and appropriate engagement, and utilize health literacy standards in preparing and delivering health information materials.

Focus on community – “not for us, without us”
In addition to the Focus Areas, all programs and projects must meet the needs of the partners and communities, as well as focus on the needs of UBR communities. To achieve this, the National Program Center will ensure all programs/projects are community- or partner-requested, community-focused, co-developed and community-verified, and/or provide evaluation that is usable by the community. The community engagement component will use community-based participatory research (CBPR) approaches and other evidence-based and evidence-informed methods in accomplishing this community-driven focus.

Program Produced Resources and Tools

The current NNLM All of Us National Program houses program materials and tools in three locations:

1) The Community Engagement Network microweb site at: https://nnlm.gov/all-of-us 

This microsite hosts engagement materials and toolkits for use by libraries and community-based organizations.

This micro website is being retired and the transfer of materials to another location (see below) has begun.

2) The Training and Education Center web site at: https://allofus.nnlm.gov/

This website hosts educational activities that are used by All of Us partners and the engagement component of the NNLM program.

This website is being re-branded and re-designed and in November 2021 will be the singular website for the NNLM All of Us National Program. 

3) The Training and Education Platform (TEP), which is not publicly available.

Access is restricted and FOA applicant will not be able to view current training offerings. A brief description of the All of Us Consortium Training Courses (PDF, 166 KB) is provided as a reference. The current TEP utilizes Moodle, a custom registration system, and access to learner metrics.

In addition, there are several engagement programs and learning activities that are in development or testing that will be released in the 2021-2022 funding cycle, which include:

  • A digital bingo game for health information to be used by families
  • A digital game about navigating health information
  • A digital learning module to help assess research claims
  • A toolkit to be used by libraries for health storytelling developed by StoryCorp
  • A series of modules and guides to be used in teaching digital health literacy skills to the community
  • Continuation of book clubs and film discussions with community partners

 

Technical Assistance Webinar

NLM will conduct a technical assistance webinar regarding the FOA. You can access the webinar via the URL listed above from a computer or mobile device. You can also listen in to the webinar via phone using the dial in number and passcode listed above. The meeting will review the purpose and objectives of the FOA, review application instructions, and address questions from the community concerning the FOA. All prospective applicants are invited to participate. Submit questions in advance to NLMEPLM@mail.nlm.nih.gov(link sends e-mail).

Slides will be posted here by Wednesday August 4, 2021. Answers to Technical Assistance Webinar questions will be posted by August 26, 2021.