“He’s used drugs - he’s biased! He’s not a drug user - what would he know!”: A cross-sectional, online study of drug researchers’ experiential knowledge of drug use and disclosure

Abstract

Introduction

Despite the recognized value of experiential knowledge, drug use and disclosure of drug use within the drug research community is rarely discussed or studied.

Methods

We distributed a cross-sectional online survey using targeted recruitment. Researchers provided information on drug use, disclosure of use (or abstinence) professionally, and their impact via write-in text boxes. We used the general inductive approach to analyze the data.

Results

Of the sample (n=669, 43 countries), 52 % were cisgender women, 89 % had post-graduate education, and 79 % worked in academia. Most (86 %) reported lifetime drug use and 47 % past 3-month use. Among 557 researchers who used drugs, 59 % disclosed their use to institutional colleagues, 59 % to colleagues outside their institution, 25 % to research participants, and 11 % in their research/scholarship. Themes included frequency; context; meaning of drug use disclosure personally, professionally, and socially; and how drug use experience and disclosure informs research. Respondents connected their concerns about disclosure in research with issues of social identity, professional risk, and the role of stigma related to lived experience. Some respondents felt that such concerns reinforce a vacuum, noting that the inability to disclose drug use limits research questions and the knowledge base overall.

Discussion

Our findings support the dichotomy of thought surrounding the lived experience of drug use: “[They’ve] used drugs- [they’re] biased!” and “[They’re] not a drug user-what would [they] know!” Our findings provide an opportunity to reflect upon our positionality and the impact researchers’ own drug use may have on the field.

Highlights

• •86 % of drug researchers reported drug use.
• •59 % of drug researchers disclosed use at their institutions or organizations and 11% in their research/scholarship.
• •Drug use experiences can positively inform research- but stigma is a barrier.
• •Researchers believe drug use could strengthen research questions.
• •If disclosing use, there are concerns that research would not be seen as objective.

1. Introduction

Scholars have explored the benefits of experiential narratives in drug policy (Valentine et al., 2020) and the importance of recognizing that professionals negotiate drug use and work identities (Kiepek and Beagan, 2018). Consideration of lived experience of drug use among drug researchers is particularly fraught in the context of stigma, moralization, and criminalization. Among the challenges of including lived experience in one’s research are potential risks and repercussions associated with potentially illegal and highly stigmatized acts. Researchers have written with insider knowledge about drug use often informed by or in partnership with peer researchers (c.f., Berg et al., 2023; Elliott et al., 2022; Greer et al., 2018; Simon et al., 2021). While drug scholarship sometimes includes peers in research in recognition of the importance of their lived experience and to access participants, peer roles have been limited and marginalized by researchers and/or their institutions. Institutional constraints often make it difficult to hire and fully remunerate peers because their expertise is not validated by an academic degree (Simon et al., 2021). People who use drugs (PWUD) have noted the inequitable power dynamics between researchers and those researched. PWUD in Vancouver’s Downtown Eastside have outlined principles for researchers who wish to work with peers in a manifesto (Neufeld et al., 2019, Boilevin et al., 2022). However, scholarship from institutional researchers, who are distinct from non-research peers, and are “out” as PWUD is rare (Harris, 2015, Hart, 2013, Race, 2009, Hart, 2022).

Researchers have written about the challenges of adopting self-reflexive positions vis à vis their own insider status- a tension between the stigma of drug use and the lack of credibility from not having experiential knowledge (Measham and Moore, 2016). Ross et al. (2020) reflect on the many issues researchers potentially encounter by disclosing drug use in their work, including risks, perception of academic rigor, and by challenging the stigma surrounding drug use. As more scholars have begun to “come out” about their drug use, they have leveraged that experience in service of their research questions, study design, and results interpretation. Walker (2021) writes that one potential outcome of researchers’ openness about lived experience is the development of a more accurate knowledge base: “Disclosure, as one possible intervention, may shape the production of different questions and knowledges about PWUD.” Perceived barriers to informing study design or interpretation with their own lived experience limits drug researchers’ ability to ask relevant and innovative questions that can move the field forward.

There is generally silence around institutional researchers’ drug use, with tacit recognition in many fields that at least some have used drugs. Kiepek and Ausman (2023) underscored the dilemma of engaging in prohibited behavior for regulated professionals who recognize the legitimacy of their drug use results in a “context of ‘don’t ask, don’t tell’” where “misinformation and biases about the effects of substances is perpetuated.” In fields such as public health and medicine, where the idea of scientific objectivity is persistent, it can be especially difficult to address lived experience. Despite professional environments that encourage discretion, some researchers choose to disclose their drug use — however severe and considerable repercussions may be. These voices tend to have varying positionalities, although our understanding of drug use by drug researchers is often limited to those with the power, privilege, and/or “bravery“ to discuss those experiences, in addition to certain drugs that have drug exceptionalism.

Scholarship oriented from experiences across a diverse continuum of drug use is relatively absent. In a special issue of the International Journal of Drug Policy, Harris and Luongo (2021) write of the challenges in bringing self-reflexive disclosure to academic research — from the precarity of job security to deference to respectability politics. A wide range of issues was explored in that issue including the politics of auto-ethnography in drug research (Wakeman, 2021), conflict of one’s lived experience with medical discourse (Frank, 2021), complications of sharing experiences with participants (Zampini et al., 2021), challenges of embodying self-regulating drug use in a culture saturated with extreme images of drug use (Walker, 2017), and the place of researchers’ voices who are not part of the academy (Simon et al., 2021).

Given the limited research explicitly engaging the lived experience of drug researchers, we aimed to explore drug researchers’ experiential knowledge, drug use disclosure, and how these issues may or may not influence their research. This study is, to our knowledge, one of the first to gather empirical data about drug researchers’ lived experiences with substance use.

2. Methods

2.1. Study design and recruitment

This cross-sectional online survey included free text questions exploring lived drug use experiences of drug researchers. A convenience sample was recruited via targeted emails to published drug researchers, social media posts, peer/colleague referrals, and advertisements with organizations that focus on drug use. The New York University Urban Epidemiology Lab official social media account posted information about this study, and lab members posted on their personal social media accounts.

We conducted a literature review in PsychINFO covering January 2018 to June 2021 in key peer-reviewed journals to solicit information from “current” drug researchers (see Table 1 for search terms and journal names). We extracted the emails of corresponding authors and generated a list of names, email addresses, journal names, and article titles. Duplicate authors were removed and tailored invitation emails were sent to invite them to complete the survey (n=3822 unique email addresses).

Table 1.

Social media and search strategy used to identify potential participants.

Recruitment approach	Search terms/strings
Social media hashtags	#drugresearcher, #drugresearch, #harmreduction, #marijuana, #cannabis, #cocaine, #heroin, #psychedelics, #psychoactive, #drugtwitter, #NDRLE, #drugresearchers, #livedexperience, #drugstudies, #criticaldrugstudies, #drugtwitter, #opioidresearch, #psychedelicresearch
Search terms	cannabis, marijuana, marihuana, THC, tetrahydrocannabinol, CBD, cannabidiol, opiates, opioids, opium, heroin, diacetylmorphine, fentanyl, opiate, opioid, methamphetamine, amphetamine, hallucinogens, LSD, psilocybin, psychedelics, mushrooms, peyote, inhalants, poppers, whippets, ecstasy, molly, MDMA, methadone, buprenorphine, suboxone, vivitrol, cocaine, coca, crack cocaine, mephedrone, cathinones, cathinone, NPS, novel psychoactive substances, synthetic cannabinoids, synthetic cathinones, aminoindanes, phencyclidine, phenethylamines, piperazines, kratom, Salvia divinorum, khat, tryptamines, substance use", "substance abuse", "substance misuse", "substance use disorder", addiction, "injection drugs", "people who inject drugs", "drug court", "drug courts", "drug policy", "drug enforcement agency", "drug selling", "drug dealing", "intent to distribute", "harm reduction", "drug possession", "drugged driving", "recreational drugs", "recreational drug", "illegal drug", "illicit drug”
Targeted peer-reviewed journals	Addiction, Addiction Biology, Addiction Research & Theory, Addiction Science & Clinical Practice, Addictive Behaviors, Addictive Behaviors Reports, Addictive Disorders & Their Treatment, Alcoholism: Clinical and Experimental Research, American Journal of Drug and Alcohol Abuse, American Journal of Orthopsychiatry, Drug and Alcohol Dependence, Drug and Alcohol Review, International Journal of Drug Policy, International Review of Psychiatry, JAMA, JAMA Neurology, JAMA Psych, Journal of Studies on Alcohol and Drugs, Journal of Substance Abuse Treatment, Lancet, Lancet Neurology, Lancet Psychiatry, Personality and Individual Differences, Psychological Medicine, Psychology of Addictive Behaviors, Social Science & Medicine, Substance Use & Misuse

Social media advertising included posts advertising the study using hashtags (see Table 1) on Facebook, LinkedIn, and Twitter. For referrals, the study team sent emails to colleagues asking them to share or retweet study advertisements. The Drug Policy Alliance (DPA) sent the advert out to their list of drug researchers. We also made strategic posts in drug research forums and on listservs hosted by organizations. Additional information can be found in Table 1.

2.2. Participant inclusion criteria and data collection

Participant eligibility criteria included (1) being aged 18 and older, (2) identifying as a drug researcher at any level (i.e., anyone working on research related to licit and illicit drug use, including but not limited to researchers/scientists, clinicians, faculty, research administrators, research directors or coordinators, outreach workers, data collectors (i.e., interviewers), laboratory technicians and assistants, peer researchers, research assistants, and interns.), (3) ability to read and write English, and (4) provision of electronic informed consent. From February 5, 2021 until July 5, 2021, respondents self-administered the online survey (Qualtrics, 2005) which collected data on sociodemographics (e.g., age, race/ethnicity, sex, educational attainment, employment status), research (e.g., duration of research career, field or discipline, funding, data collection methods), drug use, drug use disclosure, and perspectives on drug research. Respondents were asked open-ended questions about drug research and drug use disclosure (see Table 2); responses were collected via write-in text boxes. For the purposes of discussion, we include marijuana among the illegal drugs as it is illegal in most countries. Surveys took approximately 20 minutes to complete and participants could pause the survey or complete it in one sitting. The survey can be found in Supplementary Material 2.

Table 2.

Responses to open-ended questions about drug research and drug use disclosure.

Open-ended question	Number of responses
Drug research
Please describe your research in general terms. Please note that, if you describe in too much detail it may be possible to identify you.	488
If you were able to disclose your drug use how would this allow you to ask different research questions?	348
Disclosure: People who use drugs
Please list or describe the factors that influenced your decision to disclose your drug use.	410
Please list or describe the factors that influenced your decision to not disclose your drug use.	444
Disclosure: People who do not use drugs
Please list or describe the factors that influenced your decision to disclose your drug abstinence	59
Please list or describe the factors that influenced your decision to not disclose your drug abstinence.	56
Total number of responses to any opened-ended question	623

The New York University Committee on Activities Involving Human Subjects (UCAIHS) provided ethical review of this study. Respondents were not compensated for their participation.

2.3. Data analysis

We employed a general inductive approach to analyze our data. This allowed us to analyze our survey response data and respondents’ write-in text responses to determine themes surrounding disclosure (Thomas, 2003). In brief, the general inductive approach 1) condenses raw data into a summary, 2) identifies linkages between the study objectives and the summarized findings, and 3) posits a theory of the underlying structure of experiences and processes. Thomas (2003) suggests that findings from the general inductive approach may be “indistinguishable from those derived from a grounded theory approach.” Two study team members (IW and CS) read all write-in text responses and summarized the data. They then compared the summarized data with each other and generated precise codes that fit the data. The initial codebook consisted of 46 codes grouped into 9 themes. Then, four authors (DO, KS, IW, CS) conducted selective coding and refined the codebook to a final set of 53 codes grouped into 9 categories, which were used to generate 5 broader themes. Two authors (KS and CS) coded transcripts using the codebook. We compared notes, memos, codes, code intersections, and themes across transcripts to identify the most salient themes.

3. Results

3.1. Sample description

Overall, 899 individuals clicked the survey link. Of these, 887 affirmed their eligibility and provided informed consent and 669 completed at least 80 % of the survey. Of respondents, 53.5 % were recruited from social sources (e.g., email referrals, social media, conferences) and 46.2 % responded to email invites from our literature search. Respondents were from 43 countries (see Supplementary Material 1), with the majority being from the U.S. (62.2 %), Australia (7.8 %), Canada (6.9 %), and the United Kingdom (6.1 %).

The mean age was 41.8 years (SD=12.0) and most reported cisgender (52.2 % women; 42.8 % men) and heterosexual (73.3 %) identities. Most (87.5 %) had postgraduate education. Race was only collected from U.S. residents, among whom the majority identified as White (77.8 %). Additional sociodemographic and background information of participants, including degree, and setting and field of research are in Table 3.

Table 3.

Sociodemographic and background information of drug researchers, N=669.

	Overall n (%)
Age
Mean (SD, range)	41.8 (12.0, 22–82)
Gender
Cisgender man	287 (42.9)
Cisgender woman	349 (52.2)
Transgender man or woman or a non-binary identity	23 (3.4)
Missing	10 (1.5)
Sexual identity
Straight	490 (73.2)
Lesbian, gay, bisexual, queer, or non-heterosexual identity	173 (25.9)
Missing	10 (1.5)
Region
Africa	8 (1.2)
Asia and the Middle East	16 (2.4)
Europe	106 (15.8)
North America	464 (69.4)
Oceania	57 (8.5)
South America and the Caribbean	18 (2.7)
Highest educational obtainment
Secondary school or no formal schooling	1 (0.2)
College or university	71 (10.6)
Graduate degree completed	590 (88.2)
Missing	6 (0.9)
Racial identity among people who live in the US
Another racial identity	11 (1.7)
Asian	18 (2.7)
Black	11 (1.6)
Hispanic/Latino	38 (5.7)
Multiracial	9 (1.4)
White	318 (47.5)
Non-US resident or missing	264 (39.5)

e.g., masters, medical, or doctoral degree.

3.2. Drug use

The majority (85.8 %) reported lifetime use of drugs and 46.8 % reported use in the last 3 months (Table 5). The most frequently reported drugs used in their lifetime included marijuana/tetrahydrocannabinol (THC, 81.8 %), hallucinogens (50.2 %), cocaine (46.2 %), and ecstasy (42.3 %). In the past 3-months, the most frequently reported drugs included marijuana/THC (35.0 %), cannabidiol (CBD) products (10.6 %), hallucinogens and psychedelics (9.9 %), and cocaine (6.7 %). Among the marijuana users, 74.6 % of lifetime users and 78.1 % of recent users lived in a state or country where it was legalized for medical or adult recreational use or decriminalized.

Table 5.

Drug use among drug researchers, n=669.

	Lifetime use n (%)	Past 3-month use n (%)
Marijuana, hashish, and THC	547 (81.8 %)	234 (35.0)
Hallucinogens and psychedelicsa	336 (50.2)	66 (9.9)
Cocaine	309 (46.2)	44 (6.7)
Ecstasy	283 (42.3)	33 (4.9)
Inhalants	233 (34.8)	24 (3.6)
CBD Products	222 (33.2)	71 (10.6)
Ketamine	123 (18.4)	25 (3.7)
Methamphetamine	120 (17.9)	34 (5.1)
Heroin	80 (12.0)	5 (0.7)
GHB	53 (7.9)	6 (0.9)
Fentanyl	15 (2.2)	2 (0.3)
Novel psychoactive substancesb	14 (2.1)	6 (0.9)
Other opioidsc	13 (1.9)	0 (0)
Other stimulantsd	11 (1.6)	1 (0.2)
Rohypnol	10 (1.5)	0 (0.0)
Anxiolytics, sedatives, and hypnoticse	3 (0.5)	2(0.3)
Steroidsf	2 (0.3)	1 (0.2)

^aHallucinogens and psychedelics include responses to the generic term hallucinogens as well as the following write-in responses: mescaline and psychedelics;

^bNovel psychoactive substances include the following write-in responses: novel psychoactive substances, 2c-I, 3-MMC, 4mmc, 5-meo-dmt, 6-APB, 6-APB1, 25i-nbome, aMT, cathinones, designer drugs, DMT, kratom, mephedrone, methoxethamine, oral khat, spice, and synthetic cannabinoids;

^cOther opioids include street methadone and the following write-in responses: buprenorphine, codeine, morphine, opioids, opium, and Oxycontin;

^dIncludes the following write-in responses: Adderall, amphetamine, modafinil, speed;

^eincludes the following write-in responses: anxiety herbs, benzodiazepines, sedative/hypnotic, Z-drugs;

^fIncludes the following write-in responses: anabolic steroids and selective androgen receptor modulator.

Only 17.8 % of respondents considered themselves to be “out” as a PWUD; 11.1 % of PWUD disclosed their drug use in research/scholarship, 25.4 % to participants, and 34.1 % in other public contexts. Of note, 55.4 % identified as a PNUD (person who does not use drugs), and 34.1 % identified as an occasional PWUD.

3.3. Drug use disclosure and context

Six hundred and forty-nine respondents provided 2001 meaningful written responses across 6 open-ended questions (Table 4). We only analyzed responses with meaningful text; thus, we removed responses such as “NA” and “not applicable,” or those responses which were punctuation marks (e.g., “?” and “…”). Quoted participants are described by their identified drug use (lifetime PWUD, current PWUD with drug use in the past 3 months, person who does not use drugs [PNUD]) and their workplace setting.

Table 4.

Professional background information of drug researchers, N=669.

	Overall n (%)
Advanced Degree
PhD	349 (52.2)
MD/DO/MBBS	55 (8.1)
Another degreea	22 (3.3)
No advanced degree	91 (13.6)
Don’t know	61 (9.1)
Missing	90 (13.5)
Type of organization
Academic	531 (79.4)
Government agency	54 (8.1)
Non-governmental organization or non-profit organization	105 (15.7)
Pharmaceutical company	6 (0.9)
Healthcare organization	58 (8.7)
Drug treatment facility	20 (3.0)
Harm reduction program	37 (5.5)
Another type of organizationb	23 (3.4)
Position at organization
Researcher/Scientist	382 (57.1)
Clinician	80 (12.0)
Faculty	245 (36.6)
Assistant	82 (12.3)
Associate	65 (9.7)
Full	78 (11.7)
Another rank	18 (2.6)
Administrator	59 (8.8)
Research director or coordinator	76 (11.4)
Outreach worker	13 (1.9)
Data collector	31 (4.6)
Peer researcher	11 (1.6)
Research Assistant	52 (7.8)
Intern	4 (0.6)
Student or Postdoctoral Researcher	36 (5.4)
Another occupationc	25 (3.7)
Discipline
Public health	290 (43.3)
Psychology	177 (26.5)
Natural Sciences	87 (13.0)
Public Policy/Law	87 (13.0)
Health sciences	84 (12.6)
Social sciences	84 (12.6)
Sociology	55 (8.2)
Humanities	14 (2.1)

Acronyms for degrees: PhD: Doctor of Philosophy; MD: Medical Doctor; DO: Doctor of Osteopathic Medicine; MBBS: Bachelor of Medicine and Bachelor of Surgery.

^aanother degree includes DrPH (Doctor of Public Health), JD (Juris Doctorate), PharmD (Doctor of Pharmacy), ScD (Doctor of Science), PsychD (Doctor of Psychology);

^banother type of organization included networks of people who use drugs, cannabis industry, consultants, for-profit research firms, kratom stores, wellness product company, among others;

^canother occupation includes executive director, criminal investigator, policy manager, among others.

According to our quantitative survey data, respondents reported disclosing drug use to various degrees; among PWUD 59.7 % had disclosed their drug use to a colleague at their home institution and 59.2 % to colleagues at a different institution. One respondent who disclosed drug use wrote, "I wish to be as open as possible about my drug use" (current PWUD, non-profit). Conversely, one respondent reported, “I have not felt comfortable sharing my drug use in public settings or with external [formal] stakeholders” (current PWUD, academia, non-profit, and healthcare facility). Some disclosed because they were prompted in conversation, while others never had an opportunity to disclose because “nobody asked” (lifetime PWUD], academic, non-profit). Several described having to disclose because drug testing was required for employment; 6.0 % reported that their job had a random drug testing policy, and 8.5 % had been tested at their current job.

Disclosure was often related to the type of drug being disclosed. Respondents more frequently discussed drugs that were decriminalized, legalized, and/or less stigmatized in their area of residence (e.g., marijuana) versus drugs that are not (e.g., cocaine or heroin) or injection drug use. As one participant described, “Cocaine disclosure is much harder to imagine than mushrooms or weed” (current PWUD, academia). Interestingly, respondents did not disclose drug abstinence at work. Respondents felt comfortable disclosing at work that they needed help to address a substance use disorder (SUD), if they had been in recovery, drug use was nonvoluntary (i.e., they were drugged), or for medical reasons. Respondents also openly disclosed other people’s drug use, even if they did not disclose their own.

Context was important for disclosure. Several factors were important for determining disclosure appropriateness including the immediate social and physical environment, drug use culture and discrimination towards PWUD at work, community-level attitudes and stigma, and local laws. Most important was the social relationship; respondents preferred to disclose to colleagues who would not negatively impact their careers. Some respondents reported working in an environment in which drug use is the norm (Table 6).

Table 6.

Examples of quotes illustrating experiential knowledge and drug use disclosure among drug researchers.

Description	Example quote
Theme 1: Drug use disclosure and context
Some respondents reported working in an environment in which drug use is the norm.	Well, 'disclose' suggests I work in a context or operate in an environment where drug use is secret. I work with many colleagues who are also friends. We go to events, out for drinks, go dancing, go to parties, and sometimes take drugs together. So, disclosure in this setting doesn't really apply. Over many years of working with the same team, you get to know people and they get to know you. Drug use isn't seen as abnormal or strange, so drug-using experiences are just shared as one part of your life to share in getting to know someone. (current PWUD, academia)
Not all respondents felt comfortable disclosing drug use to institutional colleagues. One respondent described disclosing only to their PWUD colleagues and people outside their institution.	With colleagues, I was invited out and we took drugs together. It kind of just happened. With people outside my institution, I have disclosed at conferences, normally after drinks, when it felt appropriate to share and the person was also sharing their experiences. (current PWUD, academia)
Workplace culture influences disclosure.	There is a lot of stigma about drug use in the environment I work in- I do not want the way my work is perceived to be tainted by other people's perceptions or misperceptions of people who use/have used drugs. (lifetime PWUD, academic) For example, my nursing school drug tested us in admission and prohibits substance use, so I don't talk about drug use at school. (current PWUD, non-profit, health care facility, harm reduction program)
Theme 2: Relationship characteristics & power facilitate disclosure
Individuals with privilege were also more likely to disclose, as they felt as if their societal power and reputation could protect them, with intersectionality on gender, race, and sexual identity composing components privilege.	I am a cis gay man who is [ethnicity redacted] (i.e., brown/white-adjacent). I suspect that I'd be less inclined to disclose this stuff if I were less privileged. (current PWUD, academia) I experience the level of privilege as a middle class white cis-female that affords me a sense of comfort in disclosing my drug use. I do not feel that my drug use will alter others' perceptions of my professionalism or put me at legal risk. (current PWUD, academia).
Theme 3: Fear that drug use disclosure can jeopardize livelihoods
Participants generally held a “don’t ask, don’t tell” perspective and approach.	I think it's a horrible idea to disclose past or current use if you're federally funded (by NIDA) and you don't want people to judge you. And I would never want anyone working for me to disclose their drug use publicly. (current PWUD, health care facility)
Power was both a facilitator of disclosure and a barrier, as described by a racial and ethnic minority early career researcher.	Unfortunately, I am early in my career and cannot just publicly speak about drug use without fearing negative consequences of such an outing. Established researchers from racial/ethnic minority groups like [REDACTED] can speak up whereas young researchers are expected to conform to the law and university regulations. (current PWUD, academia)
Theme 4: Influences of drug use and disclosure on research
Those with experiential knowledge of drugs may be seen by others as impacting the type of research produced.	…if I had a positive experience with a certain hallucinogen, people may think I want to only publish positive results about that hallucinogen. That is not in fact accurate, but that may be the perception of my colleagues if I were to disclose. (current PWUD, non-profit)
Respondents who disclosed drug use believed that disclosure could promote more valid research by building participant rapport.	Minimizing shitty researchers in the field of drug research… validating work and models so they can get funding and attention, (i.e., research is me-search). (current PWUD, harm reduction program) Allow for an open conversation and dialogue that can generate better hypotheses. (current PWUD, academia) Self reflection and positionality more transparent which in turn improves the quality of the research. (current PWUD, harm reduction program)
Theme 5: Disclosure can have a positive public impact
Respondents generally believed that drug use disclosure could have a positive impact on society.	[Disclosure can] combat the stigma surrounding drug use (and how it should not be stigmatized in general), [and by disclosing the participant] felt as though [they] should disclose [their] personal drug use to demonstrate that using drugs is a normal part of many people's lives and not everyone who uses drugs has a substance use disorder. (lifetime PWUD, government agency)
Drug use disclosure can be an opportunity to aid harm reduction strategies.	While I do occasionally use drugs in social settings, I always use a reagent reaction kit to determine whether a drug is adulterated, and for powder substances to ensure there is no fentanyl or synthetic opioids present. This harm reduction approach is something that a lot of people don't know about. I think it is important to candidly discuss drug use like this when appropriate, as it may help someone else who uses. (current PWUD, academic, health care facility)
The public understanding of drug use could be improved by informing drug research with better data, more specific research about drug experiences, and a recognition of the range of drug experiences, as opposed to the general thought that drug use is equivalent to addiction.	I felt as though I should disclose my personal drug use to demonstrate that using drugs is a normal part of many people's lives and not everyone who uses drugs has a substance use disorder. (current PWUD, government agency).

Another participant described how their wider community influenced disclosure: "I live in the Midwest! Hard to read people here. If I lived on the West Coast again I don't think I would be as cautious" (current PWUD, academia).

Some PNUD believed that they were stigmatized by others for their lack of drug use: “It feels almost stigmatizing to disclose that [cannabis] is a drug I've never used” (PNUD, academia). Despite this, the majority of PNUD believed that “it is usually not relevant” for them to disclose not using drugs (PNUD, academia), and a few PNUD held beliefs about abstinence as a norm: “Drug abstinence seems normal and not needing explanation” (PNUD, academia). This suggests that PNUD may hold implicit bias and stigma surrounding drug use and PWUD as PNUD believed that drug use is abnormal behavior, and thereby the people they study are abnormal because they use drugs.

3.4. Relationship characteristics & power facilitate disclosure

Facilitators to drug use disclosure included perceptions of the individual to whom respondents disclosed: their comfort with that individual, perceived judgmental nature, the power dynamic, ability to enhance relationship closeness, and ability to remain anonymous or safe. Respondents discussed disclosure “to create rapport with [research] participants” (current PWUD, academia); 21.8 % reported disclosing to research participants. Respondents also disclosed to their students, “I have done this in my teaching and mentorship mostly because I have a great rapport with my students and, frankly, it's a context in which I have more security.” (current PWUD, academia). Individuals with privilege were also more likely to disclose, as they felt as if their societal power and reputation could protect them, with intersectionality on gender, race, and sexual identity composing components privilege (Table 6).

3.5. Fear that drug use disclosure can jeopardize livelihoods

Many respondents believed that disclosure could jeopardize their careers, public perception of their role as parents or children, credibility as researchers, funding opportunities, social privileges, and societal “reputation.” There seemed to be a general thought that disclosing past drug use was more acceptable than current drug use. Among the 554 currently funded respondents who participated in the quantitative survey, 0.9 % thought they would lose funding if they disclosed use, 14.6 % thought they maybe would, 21.8 % did not know if they would, and 42.4 % did not think they would lose funding. Regarding employment, 4.9 % thought they would lose their job if they disclosed, 19.2 % thought they maybe would, 16.2 % did not know if they would, and 59.6 % did not think they would lose their job.

Respondents described the powerful interplay of privilege in preventing disclosure. Most notable within this category is the range of barriers and perceived severity of consequences. Respondents generally reported, “fear of not being seen as ‘credible’ by social scientists that are not PWUD," (current PWUD, academic, non-profit, harm reduction program) implying that most of negative reactions would be from PNUD. Salient among respondents was a “don’t ask, don’t tell” approach (Table 6).

3.6. Influences of drug use and disclosure on research

One excerpt summarized the general sentiment of how drug use could influence research, “’He’s used drugs - he’s biased!’ or ‘He’s not a drug user - what would he know!’” (current PWUD, non-profit). Respondents generally believed that while drug use could strengthen research questions, it could also “harm [respondents’] credibility as an ‘objective’ researcher… not a hill [they] want to die on” (current PWUD, academia).

Respondents who used drugs believed that the influence of drug use and disclosure could possibly enhance research questions; however, respondents who abstained from drug use generally believed that drug use and disclosure did not affect research questions. Those who supported the utility of lived experience in expanding research questions offered several explanations as to how, ranging from attitudes that, “it is really not possible to grasp the nature of these drugs without having experienced [drugs]" (lifetime PWUD, academia) to “Personal experience of the practices we research is an asset, not a liability" (lifetime PWUD, academia).

Some believed that while their own drug use did not influence research, other factors tangential to drug use did: "My own alcohol use has been influential to my research/career, and so has the drug/alcohol use of my family." (lifetime PWUD, academia). Respondents who used drugs believed that drug use could inform recruitment, reflexivity, positionality, study design, data discussions, research questions and design, the “whys” of research questions, anecdotes which could be used in planning or teaching research, and “tools and language specific to the user position.” (current PWUD, academia). The decision to disclose or not was also a dilemma for some who collected primary data: if the respondent chose to disclose, “People with SUD might be see me [sic] as superior/better (which I am not);” however, if they did not disclose, “People with SUD might see me as ‘unexperienced’ or ‘not been there, doesn't understand me.’” (lifetime PWUD, academia).

3.7. Disclosure can have a positive public impact

While respondents provided mixed responses in regard to the influence of disclosure on research, respondents overwhelmingly believed that drug use disclosure could have a positive impact on society (Table 6). The utility of disclosure could also be used as a harm reduction aid and to improve public understanding of drug use. Drug use disclosure could remove stigma by “showing that people who use drugs are capable of all the same things as people who don’t," (current PWUD, harm reduction program), helping others understand that “drug use is not ‘the end of the line… you don't become a ‘junkie’ because you tried it” (current PWUD, academia, government agency). Additionally, drug use disclosure could reduce stigma by PWUD using themselves as an example to demonstrate that even those who have an advanced degree could use drugs as one respondent described, “I sometimes find it important to subvert expectations of people who use drugs” (lifetime PWUD, academia, health care facility). Drug use disclosure was also described as an opportunity to aid harm reduction strategies (Table 6).

Finally, respondents believed that the public understanding of drug use could be improved by informing drug research with better data, more specific research about drug experiences, and a recognition of the range of drug experiences, as opposed to the general thought that drug use is equivalent to addiction (Table 6).

4. Discussion

This study sought to identify how drug researchers perceive stigma related to drug use, how they anticipate the effects of potential disclosure of their lived experience with drugs, and if considerations about whether to signal their lived experience affect the research itself. These data raise questions about the interrelationship of one’s experiential knowledge and epistemology in drug research. Respondents connected their concerns about disclosure in research with issues of social identity, professional risk, and the role of stigma related to lived experience.

Our study findings generally echoed what is heard in community discussions and in previous research which included barriers to talking about drug use such as legal penalties, being labeled drug-seeking in healthcare contexts, disability-related issues, risk of job loss, funding loss, and security and respect in professional contexts (Luongo, 2021, Ross et al., 2020, Zampini et al., 2021). Respondents felt more comfortable disclosing past instead of current drug use — especially if they were in recovery. Consistent with previous studies and commentaries, there was a belief that while lived experience was important to their work, disclosure could seriously jeopardize careers, public perception of their familial role, credibility as researchers, funding opportunities, social privileges, and societal “reputation” (Zampini et al., 2021, Clapp et al., 2021). From issues of professional credibility to fears of losing funding, respondents felt that they risked the most if they were not in positions of social power (e.g., racial/ethnic minority, early in career, at-will employees, dependent on funding, not tenured).

With a few key exceptions, the drug research community is not grappling with its own positionality and is discouraged from doing so. At a time when acknowledging positionality has become socially significant (Muhammad et al., 2015, Zampini et al., 2021), we are too often silent about our own relationships with drugs, to the detriment of the research and the communities with whom we work. In this project, we did not seek to elevate a particular lived experience, but rather to explore whether and how lived experience informs drug research. There is, as Ross et al. argue, the all-important question of “why” one might disclose drug use (Ross et al., 2020). While researchers recognize the significant stakes in disclosure, they also believe that drug research communities should make space for the potential inclusion of researchers’ lived experiences in research design and practice. Some researchers expressed concerns that the inclusion of lived experiences might discredit their work, yet they also recognize that internalized stigma and the masking of their experiences create different kinds of misrepresentation. Our data suggest that at least some researchers seek safe, non-judgmental contexts in which lived experience can, when relevant, be included in their work. The notion that researchers are (or should be) objective is problematic when we are dealing with a subject fraught with entrenched inequalities in the policy, criminal justice, and health sectors’ responses to drug use.

While most research currently and historically examines drug use as a harmful behavioral outcome or as a risk for another negative health outcome, some research has focused on understanding the positive effects of drug use, including for pleasure (Fraser, 2008) and therapeutic use against mental health disorders (Carhart-Harris and Goodwin, 2017). Researchers who use drugs could use their experiences to affirm their subjects as autonomous people who choose to use drugs to meet a variety of needs. The self-silencing of researchers with lived experience of drug use results in a potentially impoverished relationship with research participants and places limitations on the kinds of questions asked and how they are pursued. Drug researchers’ struggles to understand their relation, as PWUD, to drug-using populations with whom they work perpetuates a sense of distance from the subject, even objectivity, where there may be none. Working with peers focused on PWUD is one way to bridge this gap, by centering the expertise of peer organizations in substantial ways—including study design, field work, analysis, and publication.

We note limitations to this study. This was a convenience sample. Our recruitment approach oversampled individuals with PhDs and undersampled field staff and peer researchers. A growing body of literature has focused on peer researchers (Simon et al., 2021, Berg et al., 2023, Elliott et al., 2022, Greer et al., 2018), but few studies have engaged non-healthcare researchers. We also likely overrepresent researchers from public health and psychology as well as those residing in North America. This study was intended to explore whether researchers’ lived experience and disclosure might be a factor in drug research. The focus on disclosure and identity gave the study a necessary focus, but also limited the scope of what we learned. A subsequent study might build on respondents’ valuation of their lived experience in their research to learn how and when researchers leverage that experience in study design and fieldwork.

Drug researchers have hesitated to recognize lived experience as a form of expertise that is relevant and authentic to our work (Harris and Luongo, 2021, Walker, 2021, Clapp et al., 2021). While not all researchers can and should “come out,” there are benefits that go beyond individual work for those who do. Many drug researchers are involved in political advocacy to reform drug laws. Our participation in advocacy based on our research would help lift some of the real risks and stigma facing those who disclose their use. Whether or not we choose, as individuals or drug researchers, to discuss our own drug use, acknowledging that there is a great deal of lived experience among drug researchers is important to our future work.

Funding

DCO is funded, in part, by the Center for Drug Use and HIV|HCV Research, a National Institute on Drug Abuse-funded center (P30DA011041). CS is funded by the National Institute of Drug Abuse (T32DA031099) and the National Institute of Allergy and Infectious Diseases (T32AI114398).

Role of funding source

Our funding source played no role in the study design or conduct.

CRediT authorship contribution statement

Cho-Hee Shrader: Writing – review & editing, Writing – original draft, Visualization, Methodology, Investigation, Formal analysis, Conceptualization. Kyle M. Snyder: Writing – review & editing, Writing – original draft, Visualization, Validation, Supervision, Software, Resources, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Danielle C. Ompad: Writing – review & editing, Writing – original draft, Visualization, Validation, Supervision, Software, Resources, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Sheila P. Vakharia: Writing – review & editing, Writing – original draft. Ingrid Walker: Writing – review & editing, Writing – original draft, Visualization, Validation, Supervision, Software, Resources, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Jules Netherland: Writing – review & editing, Writing – original draft.

Declaration of Competing Interest

No conflicts declared.

Appendix A. Supplementary material

Supplementary material

Supplementary material