Indicator Profile

Description of barriers to initiating or engaging in care and services

Category: Linkage to Care

Audience: ConvenerFunderProgram Implementer

Data Type: Qualitative

Indicator Overview

Description:

This is a qualitative indicator to assess the barriers that people with lived and living substance use experience (PWLLE) face while initiating or engaging in care to address current and ongoing needs.

We encourage you to consider if your organization would benefit from learning about barriers to care and service needs more broadly, or from selecting specific care and services that are most relevant to your context. For example, you may want to ask participants about:

Barriers to all care and services that are needed (e.g. “Reasons for not engaging / initiating care”)
Barriers to specific care and services that your organization directly provides or is interested in learning more about (e.g., “What barriers have you experienced in receiving medical care?”)

Barriers to specific care and services that are currently available in your community (e.g., “What challenges have you faced using the transportation system?”)

Rationale:

PWLLE often face a high burden of complex medical needs such as chronic disease, chronic pain, acute infections, medications for opioid use disorder (MOUD) management and psychiatric care. Additionally, increased barriers in accessing primary care, dental care, housing, harm reduction and other services may also exist, especially in people historically underserved.^1,2

Insight into the experiences of PWLLE in navigating, accessing and initiating care helps programs, communities and funders be better positioned to understand policy and/or program impacts, leverage resources to address disparities and unmet needs and promote access to care in underserved communities.

Related Indicators:

The following indicators may provide additional insight for program implementers into the types of care and services people are currently receiving as well as any stigma-related barriers.

Finally, consider examining facilitators to initiating or engaging in care or services by asking PWLLE, especially peer navigators, what is needed now and what was helpful for them by learning about what people find helpful, programs, communities and funders may better support the establishment, expansion and funding of these approaches and strategies. By understanding both barriers and facilitators to care, programs and services can be better tailored to the needs of those seeking care in their community.

Indicator Details

Definitions:

People with lived and living substance use experience (PWLLE): includes anyone who is currently or formerly impacted by their own substance use. This may include people who are currently using drugs and those accessing treatment services for support.

Barrier to initiating or engaging: Any obstacle that prevents a person from accessing, starting or receiving the care and services that they need. Barriers may include financial constraints, insufficient insurance coverage, policy (program, local, state and federal), criminal background, lack of transportation, limited availability of services, cultural or language differences and bias/stigma.

Care and services: This may be defined as a broad range of health, wellness and social services such as harm reduction, mental health, medical care (e.g., Hepatitis C and HIV services or other medical services such as primary medical or OB/GYN care), treatment for substance use disorder and housing services.

Ways to Examine the Data:

Setting – comparing barriers between service locations such as mobile unit(s) and harm reduction centers
Participant demographics^*—(e.g., race, ethnicity, sex, gender, priority population, language, housing status^**)
Learn more about collecting demographic data. This type of data collection may require specialized training, skill and financial resources

^*Note: We do not recommend funders require programs to collect or report this additional information. Collection of demographic data may not be in alignment with programmatic and social norms in communities.

^**Note: Data split into groups (disaggregated or stratified), such as by race, age, zip code, can create a small population. Data derived from small populations may not be publicly shareable if the number is deemed small enough for the personal identity of the persons represented in the data to be disclosed, possibly causing ill effects such as fear, embarrassment and stigmatization.

Data Sources:

People with lived and living substance use experience—including program clients, participants or patients

Data Collection Methods:

In many cases, primary data collection may be needed. Methods include:

Program intake forms
Point-in-time surveys
Focus groups and/or key informant interviews

Depending on the type of organization you are and the services you provide, you may consider further specifying what types of barriers you would like to learn more about.

Application and Considerations

Suggested Use:

Program Implementer

To understand needs of people served by the program
To identify and address common structural, social and financial barriers to initiating and engaging in care among PWLLE
To identify potential changes to existing protocols or policies to improve access and use of services

Community Convener

To identify and address common structural, social and financial barriers to initiating and engaging in care among PWLLE
To identify potential changes to existing protocols or policies to improve access and use of services
To identify opportunities to leverage and allocate community resources
To understand the reach of overdose prevention resources in the community in providing health, wellness and social services to underserved communities
To inform assessments of community-wide efforts in implementing impactful practices to alleviate barriers to care

Funder

To fund efforts to address common structural, social and financial barriers to initiating and engaging in care among PWLLE
To identify opportunities to leverage and allocate community resources to address disparities and promote access to care in underserved communities
To better understand the needs of people being served by recipients
To inform future funding priorities

Health Access Considerations:

You may want to consider:

How would you collect feedback from a diverse group of individuals for this indicator? Consider the different populations represented in your program or community and how engagement might vary across demographics.
What are the most common barriers to receiving quality and equitable care (e.g., insurance status, availability, stigma, transportation, language)?
What communities and/or populations in your area are historically underserved or disproportionately impacted by overdose?
To what extent have current policies and protocols impacted initiation and engagement in care among populations disproportionately affected by overdose? Among communities underserved by existing health and social service programs?
How does health literacy influence how people access and initiate care?
How does stigma towards people who use drugs influence how people access and initiate care?

Evaluation Considerations:

Centers for Disease Control and Prevention. (August 2024). CDC Program Evaluation Framework Action Guide
https://www.cdc.gov/evaluation/php/evaluation-framework-action-guide/index.html
Centers for Disease Control and Prevention. Evaluation Profile for Linkage to Care Initiatives.
https://www.cdc.gov/overdose-prevention/media/pdfs/OD2A_EvalProfile_LinkageToCareInitiatives_508.pdf

Limitations:

In some cases, self-reporting can result in social desirability bias. This is when participants provide responses that are deemed socially acceptable but inaccurate.
Some people may be hesitant to talk about their experiences because of the sensitive topic.
If you only collect data from a small group of people served by your program, you may encounter selection bias. Selection bias occurs when individuals or a group selected for a study are different from the broader population. This may mean that the data collected from this small group of people may not reflect the more general experiences of people in your community.

Policy Considerations and Resources:

Legislative Analysis and Public Policy Association. (2022). State Toolkit to End the Nation’s Drug Overdose Epidemic: Leading-Edge Actions and Strategies to Remove Barriers to Evidence-base Patient Care.
https://legislativeanalysis.org/state-toolkit-to-end-the-nations-drug-overdose-epidemic-leading-edge-actions-and-strategies-to-remove-barriers-to-evidence-base-patient-cared/
Legislative Analysis and Public Policy Association. (2023). Model Substance Use Disorder Treatment in Emergency Settings Act.
https://legislativeanalysis.org/model-substance-use-disorder-treatment-in-emergency-settings-act

Additional Resources

Examples:

Mayer, S., Langheimer, V., Nolan, S., Boyd, J., Small, W., & McNeil, R. (2023). Emergency department experiences of people who use drugs who left or were discharged from hospital against medical advice. Plos one, 18(2), e0282215.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0282215
Chan Carusone, S., Guta, A., Robinson, S., Tan, D. H., Cooper, C., O’Leary, B., ... & Strike, C. (2019). “Maybe if I stop the drugs, then maybe they’d care?”—hospital care experiences of people who use drugs. Harm Reduction Journal, 16, 1-10.
https://link.springer.com/article/10.1186/s12954-019-0285-7
Rajab, D., Fujioka, J. K., Walker, M., Bartels, S. A., MacKenzie, M., & Purkey, E. (2023). Emergency department care experiences among people who use substances: a qualitative study.
International Journal for Equity in Health, 22(1), 248. https://link.springer.com/article/10.1186/s12939-023-02050-x

References:

Degenhardt, L., Whiteford, H. A., Ferrari, A. J., Baxter, A. J., Charlson, F. J., Hall, W. D., ... & Vos, T. (2013). Global burden of disease attributable to illicit drug use and dependence: findings from the Global Burden of Disease Study 2010. The Lancet, 382 (9904), 1564-1574.
National Institute on Drug Abuse. (2020). Common comorbidities with substance use disorders research report. NIH, 1-46.

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