When it comes to addressing the complexities of substance use disorder (SUD) and addiction, innovation is essential. New technologies, treatment modalities, and community interventions are critical to tackling the ongoing challenges of prevention, recovery, and harm reduction. But the question arises: how do we ensure these solutions are truly impactful and aligned with the needs of those most affected? The answer lies in listening and incorporating voices with lived experience.
The phrase "Nothing About Us Without Us" has its roots in the disability rights movement, emerging as a rallying cry for self-determination and inclusion. It originated in Central and Eastern Europe during the 1990s, particularly in advocacy for the rights of people with disabilities, and was popularized globally by disability rights activist James Charlton in his 1998 book of the same name. The phrase embodies the principle that policies, programs, and decisions impacting marginalized or underserved communities must include those communities in the decision-making process.
Additionally, this has been a foundational principle in the drug user rights movement, particularly in Canada, where it has played a significant role in shaping harm reduction and drug policy advocacy. Rooted in the broader global movement for the rights of people who use drugs (PWUD), the phrase emphasizes the necessity of including drug users in the design, implementation, and evaluation of policies and programs that impact their lives.
Even though including everyone at the table in the decision making process is not new, a lot of work needs to be done to get those voices to the table. In the SUD innovation space, the people who use drugs or those in recovery are often left out of the conversation for how to best support individuals on their recovery journey. If you are an organization or innovator looking to get involved in the SUD solution space, consider the value that those with lived experience bring:
1. Bridging the Gap Between Theory and Reality
Those with lived experience—individuals who have navigated substance use challenges personally or through their loved ones—offer insights that are often absent from traditional research or clinical perspectives. These individuals have firsthand knowledge of the barriers, stigmas, and systemic inefficiencies that can hinder recovery. Their input can bridge the gap between theoretical solutions and real-world applicability.
For example, many technologies and programs fail to account for the social, financial, or emotional realities of someone in active addiction or early recovery. Lived experience brings a practical lens to innovation, ensuring products and services are designed for true accessibility and usability.
2. Building Trust and Credibility
The stigma surrounding substance use can make individuals wary of engaging with healthcare systems or new interventions. When solutions are co-designed or informed by individuals with lived experience, they carry an inherent credibility. People in recovery are more likely to engage with programs or tools that reflect a deep understanding of their journey, creating a sense of community and trust.
This can be especially valuable in harm reduction strategies. For instance, peer-driven initiatives, such as naloxone distribution programs, have shown increased uptake because participants feel supported by someone who has "been there."
3. Encouraging Empathy in Design
Incorporating lived experience fosters empathy in innovation teams, helping designers, developers, and decision-makers better understand the emotional and psychological landscape of substance use. This empathy can drive more compassionate design choices, such as reducing punitive measures, emphasizing user privacy, or incorporating motivational features that celebrate small milestones.
4. Ensuring Equity in Solutions
Substance use does not exist in a vacuum—it intersects with issues like housing instability, mental health, trauma, and socioeconomic disparities. People with lived experience can highlight these intersections and advocate for holistic approaches that address more than just the substance use itself. Their input helps ensure solutions are equitable, inclusive, and sensitive to the diverse challenges faced by individuals across different communities.
5. Fostering Sustainable Change
Lived experience is not just about understanding the problem; it’s also about identifying sustainable solutions. Those who have navigated recovery themselves can highlight what has worked and what hasn’t, providing valuable feedback to innovators. By embedding these insights into the development process, we can create systems and tools that have long-term viability and impact.
6. Inspiring Hope and Advocacy
When individuals with lived experience play an active role in substance use innovations, they become advocates and role models for change. Their participation not only enhances the innovation but also sends a powerful message: recovery is possible, and the voices of those who have lived through it matter. This advocacy can inspire others in their recovery journey and reduce stigma on a broader societal level.
Examples in Action
Peer Recovery Programs: Many states have adopted peer support specialists—trained individuals with lived experience—to guide others through recovery. Their unique perspective makes them an invaluable resource for those navigating similar struggles.
App Development: Digital tools like recovery apps are increasingly incorporating user feedback from people in recovery to ensure the app’s features align with their needs, such as daily journaling prompts or relapse prevention tips.
Policy Advocacy: Organizations led by individuals in recovery are influencing national and state policies to focus on harm reduction and recovery supports rather than punitive approaches.
A Call to Action: Nothing About Us Without Us
Today, "Nothing About Us Without Us" serves as a guiding principle for inclusivity and equity across the recovery field, ensuring that those with firsthand experience remain at the forefront of shaping solutions that impact their lives. Incorporating voices with lived experience is not just an ethical imperative—it’s a practical necessity.
Innovators in the substance use space must actively seek out, listen to, and collaborate with these individuals at every stage of the process. This inclusion will lead to more impactful, compassionate, and effective solutions, ensuring that innovation serves the people who need it most. By embracing lived experience, we can transform substance use care into a system that prioritizes humanity, equity, and hope—creating a future where recovery is possible for everyone.
Current Opportunities to Uplift those Voices:
Join the Transcendworx Insight Collective and bring your lived experience to the forefront of innovation. By signing up, you'll have the opportunity to participate in focus groups, pilot testing, and customer discovery for new products and services being developed by startups and researchers in the substance use disorder space. Your voice and expertise will help shape solutions that work in the real world, ensuring they are accessible, equitable, and impactful.
By joining the Insight Collective, you can be part of a growing movement to center lived experience in the creation of meaningful and effective recovery solutions. Together, we can transform the future of substance use care.
The National Institute on Drug Abuse (NIDA) is launching a working group to the National Advisory Council on Drug Abuse (NACDA) made up of people with lived or living experience (PWLLE) with drug use. The primary purpose of the group will be to advise on ways to enhance and increase meaningful engagement of PWLLE with drug use in NIDA-funded research. Workgroup members will provide input and feedback to help NIDA co-create standards for engagement of PWLLE in research that will serve as a resource for researchers and PWLLE about NIDA’s expectations regarding engagement in research. More details can be found here: https://nida.nih.gov/about-nida/advisory-boards-groups/national-advisory-council-drug-abuse-nacda/council-workgroups
Join Transcendworx’s Insight Collective. How does it work? You would sign up, and as start-ups and researchers are developing products, services, or ideas, you can share your voice and expertise. Transcenworx would reach out to folks with lived experience for focus groups, pilot testing, or customer discovery, and your input will help shape solutions that truly work in the real world. https://www.transcendworx.com/lived-experience-frontline-insight-collective
Join the HEAL Connections Lived Experience Panel. The goal of the Panel is to center the voices of people with lived experience in the work of the HEAL Initiative, partnering with people who can effectively speak to the priorities and needs of their communities. The research being conducted as part of the HEAL Initiative is broad in scope and focuses both on pain and opioid use disorder. The Lived Experience Panel is therefore recruiting a broad range of individuals, including those with pain conditions (regardless of whether they have utilized opioid medication to manage pain) and people in recovery from opioid use disorder (regardless of whether they also have a pain condition). For more details on time commitment, compensation, and how to apply, visit here: https://www.jeapinitiative.org/heal-lived-experience-panel/.
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