Researcher perspectives on including people who use drugs in clinical research

References

• Center for Behavioral Health Statistics. 2018 national survey on drug use and health: detailed tables. Rockville (MD): Substance Abuse and Mental Health Services Administration; 2019.
   Google Scholar
• Kessler RC, Nelson CB, McGonagle KA, Edlund MJ, Frank RG, Leaf PJ. The epidemiology of co-occurring addictive and mental disorders: implications for prevention and service utilization. Am J Orthopsyc. 1996;66:17–31.
   Google Scholar
• Regier DA, Farmer ME, Rae DS, Locke BZ, Keith SJ, Judd LL, Goodwin FK. Comorbidity of mental disorders with alcohol and other drug abuse. Results from the Epidemiologic Catchment Area (ECA) Study. JAMA 1990;264:2511–18.
   PubMed Web of Science ®Google Scholar
• Stein MD. Medical consequences of substance abuse. Psych Clin North America. 1999;22:351–70.
   PubMed Web of Science ®Google Scholar
• Leeman RF, Hefner K, Frohe T, Murray A, Rosenheck RA, Watts BV, Sofuoglu M. Exclusion of participants based on substance use status: findings from randomized controlled trials of treatments for PTSD. Behav Res Ther. 2017;89:33–40.
   PubMed Web of Science ®Google Scholar
• Festinger DS, Marlowe DB, Croft JR, Dugosh KL, Arabia PL, Benasutti KM. Monetary incentives improve recall of research consent information: it pays to remember. Exp Clin Psych. 2009;17:99–104.
   PubMed Web of Science ®Google Scholar
• Festinger DS, Dugosh KL, Marlowe DB, Clements NT. Achieving new levels of recall in consent to research by combining remedial and motivational techniques. J Med Ethics. 2014;40:264–68.
   PubMed Web of Science ®Google Scholar
• Fisher CB. Addiction research ethics and the Belmont principles: do drug users have a different moral voice? Subst Use Misuse. 2011;46:728–41.
   PubMed Web of Science ®Google Scholar
• Slomka J, Ratliff EA, McCurdy S, Timpson S, Williams ML. Perceptions of risk in research participation among underserved minority drug users. Subst Use Misuse. 2008;43:1640–52.
   PubMed Web of Science ®Google Scholar
• Strickland JC, Stoops WW. Perceptions of research risk and undue influence: implications for ethics of research conducted with cocaine users. Drug Alcohol Depend 2015;156:304–10.
   PubMed Web of Science ®Google Scholar
• Strickland JC, Stoops WW. Evaluating autonomy, beneficence, and justice with substance-using populations: implications for clinical research participation. Psych Addictive Behaviors. 2018;32:552–63.
   PubMed Web of Science ®Google Scholar
• Ashford RD, Brown AM, Curtis B. Substance use, recovery, and linguistics: the impact of word choice on explicit and implicit bias. Drug Alcohol Depend. 2018;189:131–38.
   PubMed Web of Science ®Google Scholar
• Goodyear K, Haass-Koffler CL, Chavanne D. Opioid use and stigma: the role of gender, language and precipitating events. Drug Alcohol Depend 2018;185:339–46.
   PubMed Web of Science ®Google Scholar
• Kelly JF, Westerhoff CM. Does it matter how we refer to individuals with substance-related conditions? A randomized study of two commonly used terms. Int J Drug Policy. 2010;21:202–07.
   PubMed Web of Science ®Google Scholar
• Lingler JH, Schmidt KL, Gentry AL, Hu L, Terhorst LA. A new measure of research participant burden: brief report. J Emp Res Human Res Ethics. 2014;9:46–49.
   PubMed Web of Science ®Google Scholar
• Ashford RD, Brown AM, McDaniel J, Curtis B. Biased labels: an experimental study of language and stigma among individuals in recovery and health professionals. Subst Use Misuse. 2019;54:1376–84.
   PubMed Web of Science ®Google Scholar
• Festinger DS, Marlowe DB, Croft JR, Dugosh KL, Mastro NK, Lee PA, DeMatteo DS, Patapis NS. Do research payments precipitate drug use or coerce participation? Drug Alcohol Dependence. 2005;78:275–81.
   PubMed Web of Science ®Google Scholar
• Festinger DS, Dugosh KL. Paying substance abusers in research studies: where does the money go? Am J Drug Alcohol Abuse. 2012;38:43–48.
   PubMed Web of Science ®Google Scholar
• Kurlander JE, Simon-Dack SL, Gorelick DA. Spending of remuneration by subjects in non-treatment drug abuse research studies. Am J Drug Alcohol Abuse. 2006;32:527–40.
   PubMed Web of Science ®Google Scholar
• Rothfleisch J, Elk R, Rhoades H, Schmitz J. Use of monetary reinforcers by cocaine-dependent outpatients. J Substance Abuse Treatment. 1999;17:229–36.
   PubMed Web of Science ®Google Scholar
• Morán-Sánchez I, Luna A, Sánchez-Muñoz M, Aguilera-Alcaraz B, Pérez-Cárceles MD. Decision-making capacity for research participation among addicted people: a cross-sectional study. BMC Med Ethics. 2016;17:3.
   PubMed Web of Science ®Google Scholar
• Darke S. Self-report among injecting drug users: a review. Drug Alcohol Depend. 1998;51:253–63, discussion 67–8.
   PubMed Web of Science ®Google Scholar
• Clark CB, Zyambo CM, Li Y, Cropsey KL. The impact of non-concordant self-report of substance use in clinical trials research. Addict Behav. 2016;58:74–79.
   PubMed Web of Science ®Google Scholar
• Devine EG, Waters ME, Putnam M, Surprise C, O’Malley K, Richambault C, Fishman RL, Knapp CM, Patterson EH, Sarid-Segal O, et al. Concealment and fabrication by experienced research subjects. Clin Trials. 2013;10:935–48.
   PubMed Web of Science ®Google Scholar
• Jones EE, Sigall H. The bogus pipeline: A new paradigm for measuring affect and attitude. Psychological Bulletin. 1971;76:349.
   Google Scholar
• Kurti AN, Davis DR, Redner R, Jarvis BP, Zvorsky I, Keith DR, Bolivar H, White TJ, Rippberger P, Markeish C, et al. A review of the literature on remote monitoring technology in incentive-based interventions for health-related behavior change. Trans Issuse Psychol Sci. 2016;2:128–52.
   PubMedGoogle Scholar
• McClure EA, Tomko RL, Carpenter MJ, Treiber FA, Gray KM. Acceptability and compliance with a remote monitoring system to track smoking and abstinence among young smokers. American J Drug Alcohol Abuse. 2018;44:561–70.
   PubMed Web of Science ®Google Scholar
• Tomko RL, Gray KM, Oppenheimer SR, Wahlquist AE, McClure EA. Using REDCap for ambulatory assessment: implementation in a clinical trial for smoking cessation to augment in-person data collection. Am J Drug Alcohol Abuse. 2019;45:26–41.
   PubMed Web of Science ®Google Scholar
• Keusch F. The role of topic interest and topic salience in online panel web surveys. I J Market Res. 2013;55:1.
   Web of Science ®Google Scholar
• McCambridge J, Kalaitzaki E, White IR, Khadjesari Z, Murray E, Linke S, Thompson SG, Godfrey C, Wallace P. Impact of length or relevance of questionnaires on attrition in online trials: randomized controlled trial. J Med Int Res. 2011;13:e96.
   Google Scholar
• Huhn AS, Dunn KE. Why aren’t physicians prescribing more buprenorphine? J Subst Abuse Treat. 2017;78:1–7.
   PubMed Web of Science ®Google Scholar
• Edelman EJ, Moore BA, Calabrese SK, Berkenblit G, Cunningham C, Patel V, Phillips K, Tetrault JM, Shah M, Fiellin DA, et al. Primary care physicians’ willingness to prescribe HIV pre-exposure prophylaxis for people who inject drugs. AIDS Behav. 2017;21:1025–33.
   PubMed Web of Science ®Google Scholar
• McGinty EE, Stone EM, Kennedy-Hendricks A, Barry CL. Stigmatizing language in news media coverage of the opioid epidemic: implications for public health. Preventive Medicine. 2019;124:110–14.
   PubMed Web of Science ®Google Scholar