Research led by people who use drugs: centering the expertise of lived experience
Creator:
Salazar, Zach, Figgatt, Mary, Vincent, Louise, Dasgupta, Nabarun, and Gilbert, Michael
Date of publication:
September 20, 2021
Abstract Tesim:
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.
Resource type:
Article
Affiliation Label Tesim:
Injury Prevention Research Center and Department of Epidemiology
Type:
http://purl.org/dc/dcmitype/Text
DOI:
https://doi.org/10.17615/hyw2-ee44
Language Label:
English
ORCID:
Other Affiliation:
North Carolina Survivors Union and
Person:
Salazar, Zach, Figgatt, Mary, Vincent, Louise, Dasgupta, Nabarun, and Gilbert, Michael
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.
Resource type:
Article
Affiliation Label Tesim:
Injury Prevention Research Center and Department of Medicine
Type:
http://purl.org/dc/dcmitype/Text
DOI:
https://doi.org/10.17615/cr6m-ea07
Language Label:
English
ORCID:
Other Affiliation:
, North Carolina Survivors Union, Guilford County Solution to the Opioid Problem, Center for Prevention Services, Community Hope Alliance, and ekiM for Change
Objective: To examine the impact of three sequential statewide policy and legislative interventions on opioid prescribing practices among privately insured individuals in North Carolina.
Methods: An interrupted time series approach was used to examine level and trajectory changes of new and prevalent opioid prescription rates, days' supply, and daily morphine milligram equivalents before and after implementation of a 1) prescription drug monitoring program, 2) state medical board initiative, and 3) legislative action. Analyses were conducted using individual-level claims data from a large private health insurance provider serving North Carolina residents, ages 18-64 years, from January 2006 to August 2018.
Results: Rates of new and prevalent prescription opioid patients were relatively unaffected by the prescription monitoring program but sharply declined in the months immediately following both medical board (-3.7 new and -19.3 prevalent patients per 10,000 person months) and legislative (-14.1 new and -26.7 prevalent patients) actions. Among all opioid prescriptions, days' supply steadily increased on average over the study period but declined after legislative action (-1.5 days' supply per year).
Conclusions: The voluntary prescription drug monitoring program launched in 2010 only marginally affected opioid prescribing patterns on its own, but its redeployment as an investigative and clinical tool in multifaceted public policy approaches by the state medical board and legislature later in the decade plausibly contributed to notable declines in prescription rates and days' supply. This study lends new emphasis to the importance of enforcement mechanisms for state and national policies seeking to reverse this critical public health crisis.
Resource type:
Article
Affiliation Label Tesim:
Eshelman School of Pharmacy, Department of Epidemiology, School of Medicine, and Injury Prevention Research Center
Type:
http://purl.org/dc/dcmitype/Text
DOI:
https://doi.org/10.17615/3yrz-5k66
Language Label:
English
ORCID:
Other Affiliation:
Pacific Institute for Research and Evaluation, , and Injury Prevention Research Center
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.
Resource type:
Article
Affiliation Label Tesim:
Department of Epidemiology and Injury Prevention Research Center
Purpose:
Abuse-deterrent formulation (ADF) opioid analgesics have been developed as a means to address prescription opioid abuse. ADF opioid use in clinical practice is not well described in the literature. This study characterizes ADF opioid prescribing patterns in 3 diverse states.
Methods:
This study used data from prescription drug monitoring programs (PDMPs) in California, Florida, and Kentucky. The sample includes all ADF opioid prescriptions for patients ≥18 years old during the study period (CY 2018). Standardized prescribing rates were calculated by age, sex, and county rurality. The ADF opioid prescribing rate was calculated per 1,000 adult recipients of opioid analgesics.
Findings:
The rate of ADF prescribing per 1,000 adult recipients of opioid analgesics was nearly twice as high in Florida (14.57; 95% CI: 14.44-14.69) than in California (8.30; 95% CI: 8.22-8.37) or Kentucky (8.20; 95% CI: 8.01-8.39). ADF prescribing rates were highest among adults ages 55-74 years and among males. ADF opioid prescribing in rural counties represented a greater proportion of total patients using opioid analgesics than in metro counties in California (RR 1.40; CI: 1.28-1.53). Opposite and less pronounced variation was observed in Kentucky (RR 0.93; 95% CI: 0.88-0.98), and a significant difference was not observed in Florida (RR 0.68; 95% CI: 0.38-1.19).
Conclusions:
There were significant differences in the ADF prescribing rates among the 3 states and in rural versus metro counties within 2 states. ADF opioid prescribing by age and sex showed similar trends within states. Further research is needed to elucidate contextual factors which may lead to prescribing variation.
Resource type:
Article
Affiliation Label Tesim:
Injury Prevention Research Center
Type:
http://purl.org/dc/dcmitype/Text
DOI:
https://doi.org/10.17615/2c8n-1w42
Language Label:
English
ORCID:
Other Affiliation:
University of Kentucky, , and University of Florida
Objective: Morphine-standardized doses are used in clinical practice and research to account for molecular potency. Ninety milligrams of morphine equivalents (MME) per day are considered a "high dose" risk threshold in guidelines, laws, and by payers. Although ubiquitously cited, the "CDC definition" of daily MME lacks a clearly defined denominator. Our objective was to assess denominator-dependency on "high dose" classification across competing definitions.
Methods: To identify definitional variants, we reviewed literature and electronic prescribing tools, yielding 4 unique definitions. Using Prescription Drug Monitoring Programs data (July to September 2018), we conducted a population-based cohort study of 3,916,461 patients receiving outpatient opioid analgesics in California (CA) and Florida (FL). The binary outcome was whether patients were deemed "high dose" (>90 MME/d) compared across 4 definitions. We calculated I2 for heterogeneity attributable to the definition.
Results: Among 9,436,640 prescriptions, 42% overlapped, which led denominator definitions to impact daily MME values. Across definitions, average daily MME varied 3-fold (range: 17 to 52 [CA] and 23 to 65 mg [FL]). Across definitions, prevalence of "high dose" individuals ranged 5.9% to 14.2% (FL) and 3.5% to 10.3% (CA). Definitional variation alone would impact a hypothetical surveillance study trying to establish how much more "high dose" prescribing was present in FL than CA: from 39% to 84% more. Meta-analyses revealed strong heterogeneity (I2 range: 86% to 99%). In sensitivity analysis, including unit interval 90.0 to 90.9 increased "high dose" population fraction by 15%.
Discussion: While 90 MME may have cautionary mnemonic benefits, without harmonization of calculation, its utility is limited. Comparison between studies using daily MME requires explicit attention to definitional variation.
Resource type:
Article
Affiliation Label Tesim:
Injury Prevention Research Center, Eshelman School of Pharmacy, and Department of Anesthesiology
Type:
http://purl.org/dc/dcmitype/Text
DOI:
https://doi.org/10.17615/e3bf-ms80
Language Label:
English
ORCID:
Other Affiliation:
University of Florida, , and University of Kentucky