The Value of Lived Experience –

Guest Post by Enid Osborne, PhD CSAT – Public Health Advisor

No doubt, you’ve certainly heard the idiomatic expression been there, done that more times than you can remember, and perhaps even used it yourself.  It’s an assertion that the individual has personal experience or knowledge of a particular place or topic and is not too keen on revisiting or redoing it again. Of Australian origin, the colloquialism been there, done that means fully experienced in, or familiar with something.  The earliest use of been there, done that, might be from The Sydney Morning Herald, October 1981: For everyone reading this who has ‘been there, done that’ or is in the middle of this familiar nightmare, the good news is that we made it. As an interjection, it flippantly expresses boredom, impatience, or lack of total interest. However, when viewed from a different lens, this overused phrase simply means lived experience.

In the world of substance abuse, mental health, and family recovery there is no substitute for lived experience!

SAMHSA recognizes recovery as a core principle in pursuit of our mission to lead public health and service delivery efforts that promote the wellbeing of mental health, prevent substance abuse, and provide treatments, and support services that encourage recovery. In 2023, the United States Department of Health and Human Services (USDHHS)  identified that ‘engaging people with lived experience represents one keyway that federal agencies gather important information, shape programming and policy, and help improve outcomes for those served.’  

The HHS Equity Technical Assistance Center (ETAC) developed a tool based on the content  suggested by ETAC’s expert consultants with lived experience and the HHS Peer Learning Community (PLC) on Equitably Engaging People with Lived Experience titled Methods and Emerging Strategies to Engage People with Lived Experience. To learn more about the roles that people with lived experience can fulfill in federal contexts, refer to the learning session on Equitably Engaging People with Lived Experience available HERE.  

According to Nora Volkow, MD NIDA (National Institute on Drug Abuse) Director, the five-year strategic plan (October 2022) prioritized research that is informed by people with lived experience of addiction themselves or their families, to best meet the needs of those directly impacted by our science. One of the seven cross-cutting priorities in the NIDA plan critical to the institute’s portfolio is developing personalized interventions informed by people with lived experience. The 2022-2026 NIDA Strategic Plan Cross-Cutting Priorities states personalized addiction medicine must consider a person’s treatment goals as well as that person’s unique and changing life circumstances. For example, it is now recognized that while abstinence may be a desired outcome for some, others may benefit from interventions that reduce drug use, alleviate withdrawal symptoms such as insomnia or depression, or lead to safer drug use practices. Perspectives from people with lived experience laid the foundation for this understanding and their voices should be included in the process of new intervention development. 2022-2026 NIDA Strategic Plan Cross-Cutting Priorities | National Institute on Drug Abuse (NIDA) (nih.gov)

Additionally, SAMHSA’s newly accepted and approved Policy on the Inclusion of People with Lived Experience stands at the forefront of this critical component to behavioral healthcare. The scope calls for all SAMHSA activities to be fully inclusive of people with lived experience involving the areas of: human resources (e.g., recruitment and retention), grants and contracts (e.g., required activities, peer reviewers), data and evaluation (e.g., recovery measure), meetings (e.g., speakers, participants), communications (e.g., use of personal stories), evidence-based practice development (e.g., family caregiving), equity (e.g., Tribal Recovery Summit), policy formulation (e.g., crisis services), and national advisory councils (e.g., membership).

The story and knowledge of the person defines their lived experience and is informed by their own process of self-discovery. It is important to emphasize that lived experience knowledge is based on someone’s perspective, personal identities, and history, beyond their professional or educational experience. This holds true not only in the substance use field, but in mental health, and in the realm of family peer support services. In recovery-oriented systems, persons with lived experience must be able to take their role as recovery experts and leaders, and with their learning through reflection on doing, of equal value to other types of learning. Thus, it is the experiential learning of lived experience that is of value, or more directly, the learning through reflection of going through the occurrence. The challenge is in distinguishing lived experience of what beyond recovery; in this, circumstance matters. For instance, learning through institutional confinement, such as hospitals or jails, is important. It has been established that the stronger the correlation the experience is, the more supportive the relationship leading to better outcomes.

Lived experience should be at the center of helping systems, but centering is more than just adding peers. Centering lived experience is an equity-focused practice that addresses implicit and structural bias in clinical systems that are built around control. Although having peer workers on staff or engaging persons with lived experience on an advisory council may be steps toward recovery-oriented systems of care, that is not sufficient for centering lived experience in policy and practice. To do so means dismantling the pathology paradigm and embracing that the social and relational dimensions of recovery that exist before, during, after the medical/clinical treatment—and often, in lieu of. There is no question that people with lived experience bring insights that can inform and improve systems, research, policies, practices, and programs. However, they must be front and center and meaningfully involved in the planning, delivery, administration, evaluation, and policy development of both services and supports to optimize results leading towards sustained long-term recovery. This applies at the federal, state, and local levels.

As individuals who bring their lived experience with them, peer support specialists encourage personal development, foster independence, and help others develop the skills they need to promote and guide them in their recovery journey. As Steve Harrington, founder of the National Association of Peer Supporters (N.A.P.S.) stated, “Simply put, peer support occurs when people in a particular circumstance reach out to help others in the same or a very similar circumstance. It is the act of a person or persons reaching out to others to help them deal with life challenges.”  The integration of peers with lived experience into diverse settings is only as effective as the organizational culture and infrastructure that supports the work. For peer work to be authentic and effective, organizations must, at a minimum, align organizational policies and practices with peer principles and practice, develop specific roles and position descriptions that draw upon peer core competencies, provide supervision that is appropriate to peer work, and offer equitable pay.

A further example of the importance of lived experience is demonstrated when a peer is working outside their own culture (etic).  To avoid unspoken and underlying bias in the delivery of recovery support services, that are built around expertise and authenticity, it is essential the peer support specialist enlist the assistance of a culture broker.

A culture broker is someone from the culture of the peer being served who can act as an intermediary between the peer support specialist and the individual receiving services. This diversity can manifest racially, gender-based, generational, country of origin, as well as a translator, or someone with a similar challenge, etc. The process emphasizes and focuses on the importance of establishing and maintaining a fair and genuine level relationship. This is particularly important in the client’s initial stage(s) of recovery and serves to reinforce the critical importance of lived experience.  

As Demetrius Fassas, Director of Butte SPIRIT Home, Butte, MT explained, “The value of one peer (in recovery) helping another is unparalleled, and it’s only just starting to be recognized in the broader treatment community, “ he continued, “it’s changing the clinical model into more of a social model…into more of a community-based, connection-driven program of recovery.”

Ideally, the peer support specialist with lived experience exemplifies SAMHSA’s working definition of recovery as someone who has restored their healthby overcoming or managing their disease, has a stable and safe homeenvironment, has given meaningful purposeto their life through this chosen career path, and has become part of the community that affords them  relationships and social networks that provide support, friendship, love, and hope. Peers with  lived experience can effectively convey and impart support for these principles to those they serve.

Unquestionably, the power of lived experience is extraordinary, and it should be at the center of all helping systems.  Afterall, those of us who have been there, done that also have the tee-shirt!