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[NCIPC] OD2A: LOCAL Linkage to and Retention in Care Surveillance

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SUPPORTING STATEMENT: PART B




May 1, 2024





OD2A: LOCAL Linkage to and Retention in Care Surveillance




OMB #0920-XXXX













Points of Contact:

Emily Ussery ([email protected])

Seung Hee Lee ([email protected])


Contact Information:

Centers for Disease Control and Prevention

National Center for Injury Prevention and Control

4770 Buford Highway NE MS F-64

Atlanta, GA 30341-3724

Phone: (770) 488-3766

Email: [email protected]

Acronyms


CoC Cascade of Care

DOP Division of Overdose Prevention

ED Emergency departments

EMS Emergency Medical Services

LTC Linkage to and Retention in Care

MOUD Medications for Opioid Use Disorder

NCIPC National Center for Injury Prevention and Control

OD2A Overdose Data to Action: Limiting Overdose through Collaborative

Actions in Localities

OUD Opioid Use Disorder

SUD Substance use disorder

StUD Stimulant use disorder

B. Collection of Information Employing Statistical Methods


1. Respondent Universe and Sampling Methods


The objective of Overdose Data to Action: Limiting Overdose through Collaborative Actions in Localities (OD2A), Component C, is to establish a surveillance system to measure linkage to and retention in care for substance use disorder (SUD). This goal is accomplished by funding 12 jurisdictions (local health departments) to collect and share standardized indicators for assessing the linkage to and retention in care for individuals with SUD, among those at increased risk of overdose. Linkage to and retention in care surveillance at the local level complements prevention-focused activities by providing a better understanding of outcomes for the Cascade of Care (CoC) for SUD, including referral to, initiation of, retention in, treatment and harm reduction services. No sampling methods will be employed.


We anticipate that all 12 jurisdictions will submit standardized indicators for linkage to and retention in care for a minimum of two entry points (where individuals with a SUD are identified). The completeness and quality of submitted data remains uncertain. The technical guidance provided by CDC outlines that certain indicators and demographic disaggregates will be required in specific years of surveillance systems, with some being optional in the earlier years and becoming mandatory in subsequent years. This flexible approach accommodates the evolving nature of surveillance requirements and allows jurisdictions to build their data collection and reporting capabilities progressively. It is important to acknowledge that the extent to which jurisdictions will be able to submit data that is both complete and accurate may vary due to factors such as resource availability, data infrastructure, and local programmatic capacity. As such, we recognize the need for ongoing technical assistance and support to enhance data quality and reporting accuracy throughout the surveillance initiative.


2. Procedures for the Collection of Information


The approach to ensure the collection of high-quality, standardized surveillance data for linkage to and retention in care is as follows:


  • Planning Year and Guidance: Jurisdictions have varying levels of experience with collecting LTC surveillance data. There will be a 12-month planning period (Sept 2023 – Aug 2024) to allow funded recipients to establish their surveillance systems for reporting standardized indicators. During this period, CDC will work closely with a subcontractor to provide detailed guidance and tailored technical assistance to ensure that surveillance data are collected at a high level of quality and standardization. This planning phase allows recipients to set up robust systems that align with the reporting guidance.


  • Data submission: Recipients are required to begin collecting standardized data by September 2024, and the first data submission to CDC is December 2024. Data will be submitted to CDC every six months and each submission will cover two quarters of aggregate data on standardized indicators.

    • Data will be submitted to CDC using the CDC REDCap interface hosted on the CDC Secure Access Management Service (SAMS), referred to as the CDC REDCap. The CDC REDCap will conduct automatic data quality checks on submitted data to verify that required data is submitted without major data quality issues. The CDC SAMS which hosts REDCap is a web site designed to provide secure centralized access to external users such as public health departments to data and computer applications operated by CDC. It can also be used to securely exchange data between CDC and the participating health departments.


  • Data Import Template: To facilitate consistency in data submissions, CDC has developed a standardized data entry form and a data import template. Recipients will use these tools to submit the required indicators, reporting their data as aggregate counts. The completed template will be directly imported into REDCap, the web-based submission platform.

    • CDC will work closely with jurisdictions to ensure data entered in the template are valid. Jurisdictions will be provided with sample SAS and/or R programming code to format their data quickly and automatically according to the template for importing their data into the REDCap. Code will also be provided to conduct additional quality checks, including:

  • Checking for missing data for required variables.

  • Ensuring all required data were submitted in the correct format using the CDC case definitions on the required reporting date.

  • Ensuring the data submission is internally consistent.

  • Identify any significant changes in data quality or completeness.


  • Exploration of Automation: CDC, in collaboration with jurisdictions, will explore additional technological solutions to further automate and streamline data submission. In 2024, a review and pilot of the reporting process will be conducted with volunteer jurisdictions to identify opportunities for reducing burden and enhancing data quality and reporting processes.


Estimation Procedures

No estimation procedures will be employed.


Degree of Accuracy

This issue does not apply to this methodology.


Unusual Problems

This issue does not apply to this methodology.



3. Methods to Maximize Response Rates and Deal with Non-response


This is the first national surveillance of linkage to and retention in care for SUD. There is variability among jurisdiction in their ability to collect linkage to care surveillance data.

To maximize success in reporting required indicators across funded jurisdictions, opportunities and challenges within each jurisdiction will be identified across several crucial domains:


  1. Relationships

    1. Determine if funded jurisdictions have strategic partnerships across sectors (public/private) that provide service delivery throughout the SUD CoC

    2. Does the jurisdiction have a formalized process (e.g., established MOUs, DUAs, other shared agreements) that facilitates communication and resource sharing with program partners?

  2. Data Access

    1. Does the jurisdiction have a standardized process and formalized agreements with all overdose prevention and response program partners for data sharing?

    2. Does the jurisdiction routinely access the internal and external data (e.g., share and have access to SUD-related data from public health surveillance systems and/or vital statistics, syndromic surveillance data, PDMP data, and/or external partners’ data sources such as EMS and justice) to inform our overdose prevention and response program?

  3. Data Granularity

    1. Does the jurisdiction use demographic data (e.g., use tailored templates to collect data that can address all demographic disaggregation value sets and link these data to additional sources that allow for additional geographic disaggregation) to target resources and interventions?

    2. Does the jurisdiction have detailed, individual-level data across programs? For example, does the jurisdiction have deduplicated, linkable line-level data that is integrated across programs and data sources (e.g., PDMP, EMS, hospital discharge data).

  4. Data Timeliness and Relevance

    1. Does the jurisdiction collect partner data and report out (to other partners, funders, CDC, etc.) in near real-time?

    2. Does the jurisdiction receive analyzed data on a regular basis from program partners and report out to partners in near real-time data from all data sources?

    3. Does the jurisdiction collect data across all indicators of the CoC and can track individuals along the continuum?

  5. Technology and Automation

    1. Does the jurisdiction have a comprehensive data system that uses APIs to access and share data, and links individual records?

    2. Does the jurisdiction routinely receive electronic data from our program partners with no manual effort required?

    3. Does the jurisdiction actively use data modernization initiative investments in their SUD CoC work?



CDC and a subcontractor will identify gaps in the above domains during the planning year and throughout the cooperative agreement period to ensure jurisdictions have the necessary knowledge and resources to address any gaps.


Feedback from jurisdictions will also be used to refine the technical guidance and to streamline the data collection process. CDC will encourage jurisdictions to share their experiences, insights, and lessons learned, facilitating a continuous learning process.


4. Tests of Procedures or Methods to be Undertaken

CDC worked closely with a subcontractor during 2022 – 2023 to develop, standardize and refine CoC indicators. The subcontractor was instrumental in developing and refining the measures and collecting and responding to feedback from local and state health departments. The indicators include identification of need, engagement by linkage to care programs, referral to care and treatment, linkage to care/treatment initiation, and treatment retention status. These standardized indicators are described in a general resource titled “Linkage to and Retention in Care Surveillance Indicators Toolkit” which includes information on suggested methods and approaches for collecting data on the indicators and guidance to advance linkage to and retention in care (LTC) surveillance and systems for health departments.


The data collection procedures and instruments are based on the Linkage to and Retention in Care Surveillance Indicators Toolkit, and include:


  • Technical guidance document: This document offers detailed instructions for collecting standardized indicators on linkage to and retention in care to funded jurisdictions. It provides step-by-step guidance on data collection processes, submission protocols and will orient OD2A:LOCAL recipients to all aspects of Linkage to and Retention in Care surveillance, including:

    • data sharing,

    • linkage to and retention in care surveillance indicators and case definitions,

    • data aggregation in the standard data submission templates, and

    • reporting timelines.

  • Jurisdictions will submit answers to metadata questions via the OD2A: LOCAL Linkage to and Retention in Care Data Entry Form in REDCap.

  • Jurisdictions will have the option to submit indicator to CDC via REDCap using one of two methods:

  1. Directly entering data into the OD2A: LOCAL Linkage to and Retention in Care Data Entry Form, or

  2. Entering data into the OD2A: LOCAL Linkage to and Retention in Care Surveillance Aggregate Data Import Template and using the data import feature in REDCap. The data import template is a tool that provides a structured framework for jurisdictions who prefer to import standardized aggregate data on linkage to and retention in care indicators. A Data Dictionary is included as a separate tab in the Data Import Template document, which includes the name, description, field type, and values for each variable.



5. Individuals Consulted on Statistical Aspects and Individuals Collecting and/or Analyzing Data


There are no statistical aspects related to this surveillance system.



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