Indicator Profile
Description of how your organization engages people with lived or living substance use experience (PWLLE) in planning and key decision making of overdose prevention programs
Indicator Overview
Description:
Description of how your organization engages people with lived or living substance use experience (PWLLE) in planning and key decision making of overdose prevention programs
Due to stigma, PWLLE may not wish to divulge current or prior substance use. Provide opportunities for people to self-disclose in a safe environment if they choose to do so.
Rationale:
Individuals with lived and living substance use experience are those directly affected by substance use and policies and programs meant to address them. This gives PWLLE unique insights that can help inform and improve policies, programs and practices1, address stigma and advance health access by reaching populations at disproportionate risk of overdose and those historically underserved within the community.2,3
Related Indicators:
To increase your understanding of your organization’s efforts to increase opportunities for and reduce stigma towards PWLLE, consider pairing this indicator with the following: Describe practices, programs and policies within or supported by your organization to address stigma towards people who use drugs (PWUD).
Program implementers whose organization employs peer workers may also consider monitoring description of efforts to support equitable treatment of peer workers employed by your organization. Tracking both or all three indicators may give you a more comprehensive understanding of how your organization supports and engages PWLLE.
Indicator Details
Definitions:
Persons with lived or living substance use experience (PWLLE) are those who identify with having first-hand experience with substance use or using drugs. Lived experience refers to persons who have used drugs and are currently in short- or long-term recovery. Living experience refers to persons who are currently using drugs and may also be commonly referred to as people who use drugs (PWUD).1
Planning and key decision making of overdose prevention programs can include a broad range of roles and activities. Organizations may consider assessing the following: opportunities to engaging bidirectionally with an organization; having an active role in shaping agendas, priorities, strategies and decision-making; holding a voting role in decision-making activities; and being fairly compensated for their time and expertise.
Data Sources:
- Organizational practices and policies
- Organizational leaders and staff
- Individuals with lived and living substance use experience who have experience working or engaging with your organization
Data Collection Methods:
- Document and/or policy review of organizational practices and policies
- Interview or focus groups with organizational leaders and staff
- Interview or focus groups with PWLLE who have experience working or engaging with your organization
- Surveys among organizational staff and PWLLE who engage with your organization
Application and Considerations
Suggested Use:
Program Implementer
- To assess how your organization is engaging PWLLE into its programming
- To help identify gaps and opportunities for greater inclusion and integration of PWLLE in planning and decision-making within your organization
Community Convener
- To assess how organizations in the community are engaging PWLLE in its overdose prevention planning efforts
- To help identify gaps and opportunities for greater inclusion and integration of PWLLE in planning and decision-making in local overdose prevention programming
Funder
- To gain insight into organizational practices of grantees and recipients
- To encourage grantees and recipients to center people most impacted by the work
Health Access Considerations:
You may want to consider:
- What was the process for engaging people with lived and living substance use experience?
- What are the demographics and backgrounds of these individuals? Do they represent diverse backgrounds, experiences and perspectives? Are the same people being engaged by multiple organizations?
- What are the experiences of the individuals being engaged by these organizations? Would they describe this as a generally positive experience? If asked, how would they rate the organization on providing a safe, non-stigmatizing environment?
- Are people being fairly compensated for sharing their time and expertise?
- What is your organization doing to actively address and reduce stigma?
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
Limitations:
- Does not assess outcomes or impacts of these efforts
- Does not capture extent of engagement with PWLLE
- Does not capture number of PWLLE represented
- Does not capture diversity of individuals engaged
- Does not capture perspectives of individuals engaged
Policy Considerations and Resources:
- Legislative Analysis and Public Policy Associates (LAPPA). (2024). Model Building the Substance Use Disorder Workforce of the Future Act.
https://legislativeanalysis.org/model-building-the-substance-use-disorder-workforce-of-the-future-act/
Additional Resources
Examples:
- Perri, M., Khorasheh, T., Edward-Ooi Poon, D., Kaminski, N., LeBlanc, S., Mizon, L., Smoke, A., Strike, C. and Leece, P. (2013). A rapid review of current engagement strategies with people who use drugs in monitoring and reporting on substance use related harm. Harm Reduction Journal 20(169).
https://harmreductionjournal.biomedcentral.com/articles/10.1186/s12954-023-00902-x - U.S. Department of Health and Human Services. Office of the Assistant Secretary for Planning and Evaluation. (2022). Methods and Emerging Strategies to Engage People with Lived Experience
https://aspe.hhs.gov/reports/lived-experience-brief
References:
- Ti, L., Tzemis, D., & Buxton, J. A. (2012). Engaging people who use drugs in policy and program development: a review of the literature. Substance abuse treatment, prevention, and policy, 7(1), 1-9.https://link.springer.com/article/10.1186/1747-597X-7-47
- Cheng, R., & Smith, C. B. R. (2009). Engaging people with lived experience for better health outcomes: Collaboration with mental health and addiction service users in research, policy, and treatment. Toronto: Ontario Ministry of Health and Long-Term Care.
https://www.researchgate.net/publication/260589695_Engaging_People_with_Lived_Experience_for_Better_Health_Outcomes_Collaboration_with_Mental_Health_and_Addiction_Service_Users_in_Research_Policy_and_Treatment - Marshall, Z., Dechman, M. K., Minichiello, A., Alcock, L., & Harris, G. E. (2015). Peering into the literature: a systematic review of the roles of people who inject drugs in harm reduction initiatives. Drug and alcohol dependence, 151, 1-14.
https://www.sciencedirect.com/science/article/abs/pii/S0376871615001404