Research led by people who use drugs: centering the expertise of lived experience.

BACKGROUND: Research collaborations between people who use drugs (PWUD) and researchers are largely underutilized, despite the long history of successful, community-led harm reduction interventions and growing health disparities experienced by PWUD. PWUD play a critical role in identifying emerging issues in the drug market, as well as associated health behaviors and outcomes. As such, PWUD are well positioned to meaningfully participate in all aspects of the research process, including population of research questions, conceptualization of study design, and contextualization of findings. MAIN BODY: We argue PWUD embody unparalleled and current insight to drug use behaviors, including understanding of novel synthetic drug bodies and the dynamics at play in the drug market; they also hold intimate and trusting relationships with other PWUD. This perfectly situates PWUD to collaborate with researchers in investigation of drug use behaviors and development of harm reduction interventions. While PWUD have a history of mistrust with the medical community, community-led harm reduction organizations have earned their trust and are uniquely poised to facilitate research projects. We offer the North Carolina Survivors Union as one such example, having successfully conducted a number of projects with reputable research institutions. We also detail the fallacy of meaningful engagement posed by traditional mechanisms of capturing community voice. As a counter, we detail the framework developed and implemented by the union in hopes it may serve as guidance for other community-led organizations. We also situate research as a mechanism to diversify the job opportunities available to PWUD and offer a real-time example of the integration of these principles into public policy and direct service provision. CONCLUSION: In order to effectively mitigate the risks posed by the fluid and volatile drug market, research collaborations must empower PWUD to play meaningful roles in the entirety of the research process. Historically, the most effective harm reduction interventions have been born of the innovation and heart possessed by PWUD; during the current overdose crisis, there is no reason to believe they will not continue to be.

Treatment experiences for skin and soft tissue infections among participants of syringe service programs in North Carolina.

INTRODUCTION: Bacterial and fungal infections, such as skin and soft tissue infections (SSTIs) and infective endocarditis (IE), are increasing among people who use drugs in the United States. Traditional healthcare settings can be inaccessible and unwelcoming to people who use drugs, leading to delays in getting necessary care. The objective of this study was to examine SSTI treatment experiences among people utilizing services from syringe services programs. This study was initiated by people with lived experience of drug use to improve quality of care. METHODS: We conducted a cross-sectional survey among participants of five syringe services programs in North Carolina from July through September 2020. Surveys collected information on each participant's history of SSTIs and IE, drug use and healthcare access characteristics, and SSTI treatment experiences. We examined participant characteristics using counts and percentages. We also examined associations between participant characteristics and SSTI history using binomial linear regression models. RESULTS: Overall, 46% of participants reported an SSTI in the previous 12 months and 10% reported having IE in the previous 12 months. Those with a doctor they trusted with drug use-related concerns had 27 fewer (95% confidence interval = - 51.8, - 2.1) SSTIs per every 100 participants compared to those without a trusted doctor. Most participants with a SSTI history reported delaying (98%) or not seeking treatment (72%) for their infections. Concerns surrounding judgment or mistreatment by medical staff and self-treating the infection were common reasons for delaying or not seeking care. 13% of participants used antibiotics obtained from sources other than a medical provider to treat their most recent SSTI. Many participants suggested increased access to free antibiotics and on-site clinical care based at syringe service programs to improve treatment for SSTIs. CONCLUSIONS: Many participants had delayed or not received care for SSTIs due to poor healthcare experiences. However, having a trusted doctor was associated with fewer people with SSTIs. Improved access to non-judgmental healthcare for people who use drugs with SSTIs is needed. Expansion of syringe services program-based SSTI prevention and treatment programs is likely a necessary approach to improve outcomes among those with SSTI and IE.

Take-home dosing experiences among persons receiving methadone maintenance treatment during COVID-19.

PURPOSE: Methadone maintenance treatment is a life-saving treatment for people with opioid use disorders (OUD). The coronavirus pandemic (COVID-19) has introduced many concerns surrounding access to opioid treatment. In March 2020, the Substance Abuse and Mental Health Services Administration (SAMHSA) issued guidance allowing for the expansion of take-home methadone doses. We sought to describe changes to treatment experiences from the perspective of persons receiving methadone at outpatient treatment facilities for OUD. METHODS: We conducted an in-person survey among 104 persons receiving methadone from three clinics in central North Carolina in June and July 2020. Surveys collected information on demographic characteristics, methadone treatment history, and experiences with take-home methadone doses in the context of COVID-19 (i.e., before and since March 2020). RESULTS: Before COVID-19, the clinic-level percent of participants receiving any amount of days' supply of take-home doses at each clinic ranged from 56% to 82%, while it ranged from 78% to 100% since COVID-19. The clinic-level percent of participants receiving a take-homes days' supply of a week or longer (i.e., ≥6 days) since COVID-19 ranged from 11% to 56%. Among 87 participants who received take-homes since COVID-19, only four reported selling their take-home doses. CONCLUSIONS: Our study found variation in experiences of take-home dosing by clinic and little diversion of take-home doses. While SAMSHA guidance should allow expanded access to take-home doses, adoption of these guidelines may vary at the clinic level. The adoption of these policies should be explored further, particularly in the context of benefits to patients seeking OUD treatment.

Consumer discernment of fentanyl in illicit opioids confirmed by fentanyl test strips: Lessons from a syringe services program in North Carolina.

BACKGROUND: The United States (U.S.) continues to witness an unprecedented increase in opioid overdose deaths driven by precipitous growth in the supply and use of illicitly-manufactured fentanyls (IMF). Fentanyl's growing market share of the illicit opioid supply in the U.S. has led to seismic shifts in the composition of the country's heroin supply. The growth in fentanyl supply has transformed illicit opioid markets once offering heroin with fairly consistent purity and potency to a supply overpopulated with fentanyl(s) of inconsistent and unpredictable potency. In response, people who inject drugs (PWID) have developed a number of sensory strategies to detect fentanyl in illicit opioids. The current study examined the accuracy of sensory discernment strategies by measuring study participants' descriptions of the last opioid injected and checked with a fentanyl test strip (FTS) by that test's positive/negative result. The primary objective was to determine associations between FTS results and descriptions of the illicit opioid's physical appearance and physiological effects. METHODS: Between September-October 2017, a total of 129 PWID were recruited from a syringe services program in Greensboro, North Carolina and completed an online survey about their most recent use of FTS. Participants were instructed to describe the appearance and effects associated with the most recent opioid they injected and tested with FTS. We conducted bivariate and multivariate analyses to determine differences in positive vs negative FTS results and the physical characteristics and physiological experiences reported. An exploratory analysis was also conducted to describe the types and bodily locations of unusual sensations experienced by PWID reporting positive FTS results. RESULTS: For physical characteristics, 32% reported that the drug was white before adding water and 38% reported the solution was clear after adding water. For physiological effects compared to heroin, 42% reported a stronger rush, 30% a shorter high, 30% a shorter time to the onset of withdrawal symptoms, and 42% experienced unusual sensations. In the multivariable model adjusting for demographics and polydrug correlates, white color of drug before adding water, stronger rush, shorter time to withdrawal, and unusual sensations were significantly associated with a positive FTS result. The most common unusual sensations were pins and needles (51%), warming of the head and face (35%), and lightheadedness (30%), and the most common locations where sensations occurred were face and neck (61%), arms/legs (54%), and chest (37%). CONCLUSION: We found positive FTS results were significantly associated with the physical characteristics and physiological effects described by PWID. Descriptions concerning physical appearance were consistent with law enforcement profiles of illicitly-manufactured fentanyl and physiological effects were concomitant with scientific and clinical medical literature on iatrogenic fentanyl use. Taken together, these findings suggest sensory strategies for detecting fentanyl in illicit opioids may be an effective risk reduction tool to help consumers navigate unpredictable markets more safely.