Executive Summary

What This Project Adds

The Patients Lead project is the first national examination of treatment outcomes prioritized by people with substance use disorders.

The findings show individuals most care about survival, improving their quality of life and mental health, reducing harmful substance use, meeting their basic needs, increasing their self-confidence, and increasing their connection to ongoing services and supports.

These broad expectations provide direction for reshaping research, services and policies to more effectively address the national epidemic of substance use disorders. Priority outcomes also differ across race and gender demographics, emphasizing the need for individually tailored, culturally and linguistically effective treatment and services, and the need to acknowledge and address structural inequities.

The Goal

The Patients Lead project aims to identify what outcomes matter most to people with substance use disorders to ensure their voices guide future research and action to improve the system. The ultimate goal of the project is to improve treatment outcomes by focusing research, policymaking and service delivery on what people with substance use disorders want and need.

Why it Matters

More than 20 million Americans have substance use disorders, and overdose deaths are rising. Too often, people with lived experiences of substance use disorders are left out of important policy decisions that affect their lives, including how treatment and recovery programs are designed and what outcomes those programs seek to achieve. This means that research on what works best often isn’t focused on what matters most to people with addiction, resulting in services that aren’t always responsive to individuals’ needs and don’t achieve the best results.

More than 20 million Americans have substance use disorders, and overdose deaths are rising.

What We Learned

After engaging 882 individuals with lived experience of substance use disorders across the country, we learned that the outcomes from treatment and recovery support services that matter most to individuals are:

  1. Staying alive
  2. Improving quality of life
  3. Reducing harmful substance use
  4. Improving mental health
  5. Meeting their basic needs
  6. Increasing self-confidence/self-efficacy
  7. Increasing connection to services and supports
During COVID-19, the majority of respondents want the same top results as they did prior to the pandemic.

For the 20 percent of people who prioritized different outcomes during COVID-19, quality of life became less important while connection to recovery support services, and taking care of basic needs, became more important.

These priority outcomes reflect the broad expectations people have for treatment ensuring their survival and improving their lives, and the lesser priority they place on completely stopping all drug and alcohol use. The results also highlight differences in priority outcomes across different demographics. For example, 25 percent of white respondents selected “stop all drug and alcohol use” as a top priority compared to 13 percent of multiracial respondents. Also, 59 percent of transgender/nonbinary respondents selected “stay alive” as a priority outcome compared to 26 percent of women.

Amid a period of national reckoning on racial injustice, COVID-19 has laid bare the racism in the health system, as those who already face unequal and discriminatory treatment continue to be hit hardest. Meanwhile, drug overdoses are increasing and addiction continues to be criminalized, especially among Black and brown communities.

The project findings demonstrate the need to reshape research, services, and policies to achieve patient priorities as part of larger efforts to address structural inequities. The findings also indicate the importance of providers understanding individuals’ treatment and recovery goals, and providing culturally and linguistically effective services tailored to the person’s desired outcomes and intersecting identities.

What We Recommend

We recommend policymakers, service providers, and patient-centered outcomes researchers focus on the outcomes that project participants prioritized and take action to improve addiction treatment. Our specific recommendations include:

For policymakers: Increase funding for the full continuum of services, from prevention and early intervention, including harm reduction and crisis services, to inpatient and outpatient treatment, to residential services and long-term peer recovery supports, including those provided by recovery community organizations. Target funding for harm reduction programs that focus on keeping individuals alive and reducing self-harm, for example overdose prevention and syringe services; also, fund provider education on harm reduction.

For services providers: Clarify each individual’s desired treatment and recovery goals and adjust services to meet those goals. Integrate mental health supports into substance use disorders services even for individuals without a documented mental illness diagnosis.

For researchers: Investigate which treatment and recovery support services, including peer services, best achieve the outcomes patients want. Stratify all comparative effective research (CER) and patient-centered outcomes research (PCOR) related to substance use disorders by race/ethnicity and gender, and report findings by these demographics to inform clinical and non-clinical recommendations and policy solutions that address systemic inequities.

If you would like additional information about this report, please contact the project team.