Deriving value from lived experience

Deriving value from lived experience
By David Awadalla and Syreeta Skelton-Wilson
Apr 14, 2022

Hi, my name is David Awadalla, and I am a person in long-term recovery from a substance and opioid use disorder.

I’m a senior research scientist with ICF, where I have the privilege of working with diverse government agencies on a variety of projects—including CDC’s Division of Overdose Prevention, HUD’s Recovery Housing Program, and various state health departments—to mitigate the substance use and overdose crisis that is affecting so many of our friends, families, and neighbors.

I also serve as the technical lead for the ICF Lived Experience Consulting Collaborative (LEC2), a new initiative to enhance our work and support the strategic engagement of lived expertise among ICF staff.

Through the LEC2, we are seeking to:

  • Raise awareness of the value of lived experience across ICF and enhance ICF’s reputation among partners and clients
  • Identify and track new and existing contracts, projects, and legislation that involve (or could benefit from) the voices of those with lived experience
  • Recruit other ICF staff and partners who may be able to collaborate on or contribute to work that would benefit from lived experience
  • Contribute to the body of research and document the value of lived experience in health and social programs
  • Contribute to the identification of best practices surrounding the incorporation of those with lived experience in social policy and health programming

What is lived experience?

Lived experience can be defined as “representation and understanding of an individual’s human experiences, choices, and options and how those factors influence one’s perception of knowledge” based on one’s own life. In this blog, I’m specifically referring to the above definition as it relates to my own experiences with opioid use, substance use, and incarceration.

What is my lived experience?

I could probably write an entire book about my own lived experience. I will gladly tell you a little bit about how I—a formerly incarcerated person with a severe substance and opioid use disorder—came to be in my current role with ICF.

When I was 10 years old, I moved from a small Canadian town to the hustle and bustle of Atlanta, Georgia. As those oh-so-important pre-teen years began to shape who I would become, I remember feeling a constant, uncomfortable twinge of angst as I struggled to fit in and make friends. Once I hit 16, I discovered that alcohol and marijuana could almost eliminate those growing feelings of angst and isolation. Almost.

That was until my sophomore year at the University of Georgia, when I experienced a minor back injury during lacrosse practice. A quick trip to the doctor revealed moderate muscle strain, and I was quickly sent home with a hydrocodone prescription for the pain.

“So, this is how I’m supposed to feel. I wish I could feel like this for the rest of my life!” I remember thinking about 15 minutes after popping that first pill. “Plus, my doctor said it was ok!”

Then and there, that “almost” turned to “always.” And the rest is history.

A few years later, after struggling on and off with intravenous heroin use and experiencing several run-ins with law enforcement, I was sentenced to two years in prison for a non-violent drug crime. I was released from prison in 2013 and my struggle continued for several more years. But this story, unlike so many of my friends’ stories, does have a happy ending.

"Recovery is possible, and recovery happens."

— David Awadalla

Go to ICF

In December of 2015, I entered long-term recovery and graduated with my bachelor’s degree in public health. In 2018, I completed my Master of Social Work at the University of Michigan and went on to work for several branches of state and federal government—including the Substance Abuse and Mental Health Services Administration and the Michigan Department of Health and Human Services. In 2019, I joined ICF, where I get to promote and incorporate lived experience across our organization and among our partners every day through ICF’s LEC2 and CDC’s Overdose Data to Action Technical Assistance Center. And in 2021, I married my amazing and supportive wife.

I recently spoke with Syreeta Skelton-Wilson, manager of research science at ICF and co-author of the ASPE/ICF Lived Experience Brief published by the US Health and Human Service Office of the Assistance Secretary for Planning and Evaluation, to get additional perspective on the inclusion of lived experiences at ICF.

David Awadalla: Syreeta, could you tell us a little bit about yourself?

Syreeta Skelton-Wilson: I’ve had many personal experiences that connect with and inform my work and professional interests—such as experiences with racism and discrimination, chronic illness, mental illness, sexual abuse, suicide, substance abuse, and special educational needs. These experiences drove me to the social science field where I’ve worked to apply research methodologies to better understand the human condition, social phenomena, and public programs, policies, and interventions to address social ills.

In my current work, I focus on understanding the drivers and solutions to health disparities and inequities that exist among specific populations such as American Indian/Alaska Natives and African Americans. One of my most recent projects with ICF was a research study examining “Methods and Emerging Strategies to Engage People with Lived Experience in Improving Federal Research, Policy, and Practice” that led to the development of the brief.

David Awadalla: How is the work that you do at ICF informed by your own lived experience?

Syreeta Skelton-Wilson: Historically, there weren’t many spaces where I was able to apply my lived experience in my work as directly as you have. More recently, I have observed a shift at ICF and across its partners to expand opportunities for individuals with lived experience to engage in all facets of our work.

I had the opportunity to incorporate my own lived experience into writing the Lived Experience Brief we authored in partnership with ASPE. I was able to use my own lived experience in the research that we conducted to develop the brief. For example, my own experiences within the mental healthcare system really helped me understand the importance and roles of consumer-provided and peer support services. Additionally, I was able to receive validation regarding my own experiences with the stigmatization of seeking help for mental illness and suicide within the mental healthcare system related to my own mental health and the very recent suicide of my stepson.

David Awadalla: Why is it important for federal research, policy, and practice to incorporate the voices of those with lived experience?

Syreeta Skelton-Wilson: One of the benefits of using lived experience in federal research, policy, and practice is that it gives agencies a clearer and richer understanding of what people need and what it takes to create policies and services that meet their needs. Agencies can respond to those needs with better products and services that are more accessible and responsive to the populations they serve. Furthermore, engaging individuals with lived experience helps agencies better define what success looks like. So, in the end, individuals as well as federal programs, initiatives, and agencies benefit.

Lastly, engaging individuals with lived experience offers opportunities for increased inclusiveness and diversity of people with cultural, ethnic, intersectional, and cross-sectional identities that are unique and underrepresented in the federal government structure. It also offers a way for disenfranchised and deprioritized populations to provide direct input to resolve some of the issues that impact them the most. Agencies that engage individuals with lived experience can create bridges and opportunities to recruit, hire, and retain diverse groups who may not meet the traditional profile of people they hire through typical channels. Through the creation of non-traditional hiring mechanisms for individuals with lived experience, agencies are better able to incorporate individuals with diverse backgrounds, cultures, and capacities.

David Awadalla: What tips do you have for those who are interested in implementing lived experience into their work?

Syreeta Skelton-Wilson: I am going to share my top four highlights from the research that aim to help organizations build capabilities and expertise around lived experience engagement to enhance and refine the engagement approaches, activities, and infrastructure to support lived experience. There are others in the brief, so I recommend folks check it out for more information.

  • Staff should prepare and plan to engage individuals with lived experience to ensure that the coaching, mentorship, and training needed to help lived experience experts be successful is available. Adequate planning and preparation can help organizations better sustain lived experience as a routine aspect of their work.
  • Organizations that want to leverage the lived experience of individuals to enhance their work should dedicate resources—such as funding, staff, infrastructure, etc.—to support engagement activities that use lived experience perspectives and input. These resources will better equip organizational staff and partners with the skills to offer mutually beneficial engagement. It will also ensure that lived experience experts receive equitable compensation that recognizes the value of their contributions.
  • Staff and organizations should also offer diverse, meaningful opportunities for authentic and intentional engagement of lived experience throughout the program lifecycle—from conceptualization through implementation and evaluation.
  • Finally, organizations should integrate people with lived experience into the workforce. This can be done by making sure staff and organizational leaders demonstrate ongoing support of practices that include individuals with lived experience, exhibited through staff recruitment, hiring, and retention efforts.

"Engaging individuals with lived experience offers opportunities for increased inclusiveness and diversity of people with cultural, ethnic, intersectional, and cross-sectional identities that are unique and underrepresented in the federal government structure. It also offers a way for the disenfranchised and underserved to provide direct input to resolving some of the issues that impact them the most."

— Syreeta Skelton-Wilson

Meet the authors
  1. David Awadalla, Senior Research Scientist, Opioids
  2. Syreeta Skelton-Wilson, Senior Manager, Research Science

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