Lived Experience Inclusion Project Types Overview (Draft Half-Finished Report In-Progress)

Background

Start of a overview report detailing specific methods Peer Voices Network recommends for incorporating lived experience input into health services funding decision-making efforts. This report is being tailored for a health committee working on substance use health policy and treatment recommendations. 

Lived Experience Inclusion Project Types Overview Report (Incomplete In-Progress Draft)

1) Needs Assessment

A classic policy research option, this would involve a report centered around the question of "what does the lived experience community itself think it most needs?". And, specific to opioid settlement funds, reporting on "what does the full lived experience community think the money would be best spent on?". Peer Voices Network has connections to communities and perspectives often not heard from or elevated, and conducts research using novel co-produced community input methodologies.

Example Methodology: "Problem Tree" Community Mapping

Lived Experience / Research Misalignment Example (from autism work, our other speciality area)

"Studies show that autistic people want more research on mental health, services and the other conditions that many of them experience — including epilepsy, gastrointestinal pain, intellectual disabilities and sleep problems. However, most funding goes to studies on genetic and environmental risk factors, treatments and interventions."

Nature News Feature, May 2023

Article Link: ‘I am not a broken version of normal’ — autistic people argue for a stronger voice in research

2) Conceptual Engineering

A more layman description of this effort can be described as: "Developing More Accurate and Culturally-Sensitive Understandings of Emotional Distress". Making sure, when we use a term like "disorder" or "disease" or "problem", everyone in the room is on the same page understanding what's being meant by use of that term. And, critically, that the peer population itself has co-created those terms and given consent that their living experience feels accurately represented and validated.

Project deliverables tend to involve items such as education materials and trainings. For example, for the opioid crisis, a presentation example might look like: "A Fully Holistic Understanding of Substance Use Disorder". This would include an overview of how previously un-considered treatment options reveal themselves when we collectively re-adjust our understandings and framings of the issue at hand. This can also then lead into practical policy/services suggestions for decision-makers such as opioid settlement funds Boards and councils.

Example Conceptual Engineering Paper 

"The concept of climate injustice and a socio-critical, psychoanalytical perspective associate the climate crisis with other forms of social injustice classifying these as ‘social pathologies’. ... Some ‘psychopathology’ can be reframed as a meaningful, resistant expression of social grievances." 

Bauriedl-Schmidt et al. (2022)

Article Link: Understanding climate injustice as social pathology through the lens of psychoanalysis, recognition theory and critical psychology

Example Concept Misalignment Study

"Research published online Thursday in the journal Open Mind shows that our concepts about and associations with even the most basic words vary widely. At the same time, people tend to significantly overestimate how many others hold the same conceptual beliefs — the mental groupings we create as shortcuts for understanding similar objects, words or events. ... Take penguins. The probability that two people selected at random will share the same concept about penguins is around 12%, Kidd said."

New research from UC Berkeley about mismatch in conceptual definitions, March 2023

Article Link: I say dog, you say chicken? New study explores why we disagree so often