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NOT-AG-24-024 - Notice of Changes to NOT-AG-24-011, "Request for Information (RFI) for the NIA Data Linkage Program (LINKAGE): Linking Research Data with Data from the Centers for Medicare and Medicaid Services (CMS) and other Federal Sources"

Issued by

National Institute on Aging (NIA)

Purpose

Purpose

The purpose of this Request for Information (RFI) is to solicit comments and suggestions that the National Institute on Aging (NIA) will consider as strategies to make linked data - combining Centers for Medicare & Medicaid Services (CMS) data and data from other Federal sources with data from NIA-funded studies - available to NIA grantees and other researchers in a secure environment (enclave) for the purposes of data analysis and sharing.

NIA seeks input on six areas listed below, specifically regarding approaches and associated costs.

1. Identifying desired federal datasets for data linkage beyond CMS data
2. Enhancing linkage methodologies and services
3. Improving enclave infrastructure for NIA-funded Studies and Researchers
4. Streamlining required documentation/forms and processes for accessing linked datasets to reduce data request burden
5. Identifying meaningful training, website resources, and technical assistance for Studies and Researchers
6. Targeting key audiences for data utilization (e.g., graduate students, new investigators, etc.)

This RFI supports NIA’s goals to advance data sharing, accelerate access to Federal data, and improve NIA Data Linkage Program (LINKAGE) services for Studies and Researchers.

Note: Individuals/entities that respond to this RFI are ineligible from participating in a future contract competition of the NIA Data LINKAGE Program (NIA Data LINKAGE Program (LINKAGE) | National Institute on Aging (nih.gov)). 

Background

LINKAGE is supported by an NIA service contract that provides linkage services, a secure enclave for data analysis and sharing, and technical assistance resources. These services are primarily available to two audiences: NIA-funded grantees (known within the Program as Studies) and Researchers. Studies can use the LINKAGE program to link their datasets with CMS data and make their linked datasets available to interested Researchers via the secured enclave. Additional information about the program and audiences are available on the Access or Share LINKAGE Data page.   

Information Requested

Through this RFI, NIA invites feedback from academia, industry, health care professionals, scientific or professional organizations, Federal agencies, and other members of the public. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership on any or all components of this RFI. 

1. Identifying additional Federal datasets for data linkage

• The LINKAGE Program focuses on linking CMS data with data from NIA-funded Studies. A selection of these linked datasets is available to other Researchers. Provide examples of other federal data sources that could advance aging research and should be linked and available for NIA-funded Studies and Researchers, as well as a justification for what sensitive data should be made available. 

2. Enhancing data linkage methodologies and services 

• Discuss what methodologies are appropriate for linking Study and Federal data sources with PII (e.g., CMS data, National Death Index data, etc.). Elaborate on the use of privacy-preserving record linkages (PPRL), personally identifiable information (PII) linkages, probabilistic linkages, and other methodologies.  
• Explain whether your organization can provide linkage services to link two or more datasets, including federal data and private data sources such as electronic health records or private claims with PII. Please describe your experience and elaborate on the types of linkage services your organization has provided, to date.  

3. Improving enclave infrastructure for NIA-funded Studies and Researchers 

A. Provide feedback on the following topics regarding features of enclave infrastructure:

• How an enclave can be designed to provide NIA-funded Studies and Researchers efficient and user-centered access for data analysis and sharing, including pooling of NIA-funded Studies for analyses and risk associated with them, and the essential features of the enclave.
• What enclave designs/features will allow Studies to provide seamless access for members of their Study and new Researchers.
• What security features/tools are necessary to ensure safe data management in the Federal Information Security Management Act (FISMA) Moderate Authority to Operate (ATO) Environment and a FISMA High ATO Environment.
• What statistical or other tools are necessary to support Studies and Researchers.
• What types of data and analysis will require graphics processing unit (GPUs) vs. central processing units (CPUs).
• What types of zero trust architecture are necessary to house Federal and sensitive data.
• What type of review features (e.g., manual review of output) are needed to protect privacy of data that will be shared.

B. Provide feedback on the following topics regarding costs for enclave infrastructure:

• Whether your organization has capability to build and provide enclave services, and if so, what those capabilities are.
• What associated costs are necessary to establish an enclave that facilitates data sharing, storage, and analysis with multiple parties.
• How a centralized network or enclave could be structured to lower cost with federated access.   
• What costs are associated with audits for establishing a FISMA Moderate ATO Environment and a FISMA High ATO Environment. 

4. Streamlining required documentation/form and processes for accessing linked datasets to reduce data request burden

• NIA-funded Studies currently establish their own unique processes to assess and confirm that prospective Researchers have met appropriate requirements to access Study data. Studies and Researchers must also complete an NIA Data Use Agreement and receive approval through an NIA Privacy Board. Explain how the study-specific process to access linked datasets could be standardized, potential concerns or challenges, and the efficiencies that could be gained through a standardized process.
• Describe the barriers for obtaining access to Study data or NIA Privacy Board approval.

5. Identifying meaningful training, website resources, and technical assistance for Studies and Researchers

Describe the following:

• Types of training that would be helpful for Studies and Researchers to learn about the LINKAGE Program.
• Helpful training topics (e.g., an overview of CMS data, learning about available datasets from participating Studies, etc.).
• Content that would be helpful to post on the LINKAGE Program website.
• Technical assistance support that would be essential to Studies and Researchers seeking to conduct data linkage and analysis and share their datasets. 

6. Targeting key audiences to for data utilization

Explain the following:

• Who prospective audiences are for the program.
• How NIA can promote the program to prospective audiences.
• If audiences are expanded, should any audiences be required to pay fees to participate in this Program (currently, LINKAGE Program resources and services are free to Studies and Researchers).
• How NIA can enable data sharing for restricted data in the enclave.

How to Submit a Response

Responses to this RFI must be submitted via email to [email protected]. Responses must be received by 11:59:59 pm (ET) on June 21, 2024, 2024.

Responders are free to address any or all the topics listed above. All submitted information will be reviewed by NIH staff and contractor support personnel. Responses to this RFI are voluntary and may be submitted anonymously. You may voluntarily include your name and contact information with your response. If you choose to provide NIH with this information, NIH will not share your name and contact information outside of NIH unless required by law.

The information provided will be analyzed and may appear in reports. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. No proprietary, classified, confidential, or sensitive information should be included in your response. The NIH may use the information gathered to develop grant, contract, or other funding priorities and initiatives.

This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government general, the NIH, or NIA specifically. The NIH does not intend to make any awards based on responses to this RFI or pay for the preparation of any information submitted or for the Government’s use of such information.

Inquiries

Please direct all inquiries to:

Office of Data Resources and Analytics (ODRA)
Division of Behavioral and Social Research (DBSR)
National Institute on Aging (NIA)
Email: [email protected]