Something does not add up: Rethinking how we compensate for research participation among people who use drugs

Abstract

In this commentary, we draw upon the care ethics framework to discuss why and how substance use researchers should re-evaluate traditional best practices for participant compensation. We encourage researchers to have conversations with community partners and potential participants alike on how compensation can convey appreciation, whether the participants have a need for the specific type of compensation, and if participants are able to capably and conveniently use it. When planned poorly, compensation can cause harm to participants and communities and undermine research efforts. Three case examples are provided to illustrate these points. Lastly, we urge researchers to update their respective institutions about barriers to equitable compensation that may be embedded within the research infrastructure. Overall, compensation has the potential to strengthen collaborations between researchers and community members and provide a strong foundation for rigorous and impactful substance use recovery research.

1. A need for revisiting participant compensation standards for people who use drugs

Since the mid to late 1990s, opioid-related overdose deaths have rapidly increased in the United States (Jalal et al., 2018). Federal efforts to improve access to recovery support services and treatment and increase monitoring of opioid prescribing and population-based substance use have had unequal benefits (Larochelle et al., 2021). Most starkly, rates of opioid-related deaths have stabilized among White Americans while increasing among racial and ethnic minoritized groups including Black, American Indian/Alaska Native and Latinx Americans (Furr-Holden, Milam, Wang, & Sadler, 2021; Lippold & Ali, 2020; Spencer, Garnett, & Miniño, 2024). In response, funding has been dedicated to research aimed at mitigating sociodemographic disparities in treatment access and recovery outcomes. However, those marginalized based not only on drug use but also intersecting sociodemographic characteristics such as race/ethnicity and class can face practical and psychological barriers to research participation that are often overlooked by research paradigms. Often underestimated in its importance, participant compensation can either empower a participant, contributing to trust and reciprocity between them and a researcher, or leave them feeling further stigmatized and demeaned (Abadie, Brown, & Fisher, 2019; Collins et al., 2017). Thus, stigmatized populations living at the intersection of multiple oppressive systems, including people who use drugs or who are in recovery, may be particularly vulnerable to inequities inherent in the existing “universal” standards of participant compensation that fail to consider the contexts of power, privilege, and marginalization (e.g., Fry, Hall, Ritter, & Jenkinson, 2006). To advance health equity in substance use research, and in turn, substance use treatment and recovery, a reconsideration of commonly used participant compensation strategies is needed.

1.1. Institutional research compensation guidelines: limitations

Although participant compensation is a largely accepted and long-standing research practice, institutional allowances of how and to what degree participants can be compensated vary widely (Lemansky, Martin, Bernstein, & Assoumou, 2023). In the United States, guidelines for participant compensation are informed by the 1979 Belmont Report’s principle of respect for persons. This principle protects the autonomy of research participants, ensuring self-determination through informed consent and minimizing undue influence (United States National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). The question of how to show respect for autonomy is of critical importance when working with research participants who experience addiction, as a common assumption about addiction is that it severely diminishes or negates one’s autonomy (Doucet & Porter, 2023). However, even in the context of addiction, the experience of autonomy may remain intact, and several modifiable internal or external factors that can either enhance or diminish autonomy. External threats to autonomy associated with substance use, such as homelessness and incarceration, result from policy responses to drug use, whereas policies and interventions that emphasize choice and empowerment may create contexts in which people who use substances can exercise autonomy. Although addiction may infringe upon an individual’s experience of being able to live according to their values and to exercise choice through their actions, feelings of loss of control or compulsion vary across the course of substance use disorder and use of substances may be motivated by attempts to control distress, rather than purely through compulsion (Doucet & Porter, 2023).

Providing payment for research participation to participants who use substances is generally considered ethically defensible. Yet, there is often concern from institutional research boards that payments may unduly induce participation in research studies (Wertheimer & Miller, 2008) as it relates particularly to participants who both use substances and who experience severe poverty and material deprivation (Bell & Salmon, 2012). It is argued that in response to the incentive of financial compensation, some eligible individuals could feel overwhelmingly compelled, (physically due to withdrawal symptoms and mentally), to participate to meet some of their immediate needs (e.g., money for a meal or a batch to manage withdrawal symptoms) (Abadie et al., 2019). While these factors may potentially exert a form of undue inducement in some cases (Wertheimer & Miller, 2008), research demonstrates that many participants who use drugs are fully capable of comprehending the study consent process (Bell & Salmon, 2011; Gelinas, White, & Bierer, 2020), contrary to assumptions that they are generally too impaired to knowingly participate (Bell & Salmon, 2012, and that payment does not increase substance use among participants in the short term. (Festinger et al., 2005) Also, participating in a survey or an interview may be less harmful than other activities that participants may engage into secure substances to manage cravings (e.g., trading sex etc.) Lastly, these concerns perpetuate stereotypes that people who use drugs and who are economically disadvantaged will only participate in research for monetary incentives because of their current circumstances, rather than be altruistically motivated by the potential to benefit others (Fry & Dwyer, 2001). Therefore, worries of enabling use or other less desirable activities via compensation may result in study decisions that inadvertently harm the investigator-participant relationship (e.g., via highly restrictive or no compensation), and the future of a research institution’s collaboration with a community.

Coercion in the research context involves threatening or forcing someone to act and is thus a violation of participants’ rights and invalidates consent (Wertheimer, 1987). According to this definition, payment for research participation is not inherently coercive (Wertheimer & Miller, 2008). However, some scholars have challenged this argument by introducing the concept of subjection as a form of coercion. In some cases of coercion-as-subjection, payment for research participation may be considered as a means of subjecting the participant’s will to that of the researcher’s because of a lack of other available options when faced with a dire situation (Millum & Garnett, 2019). An example provided is that participants in extreme poverty may be coerced by the research payment if they lack any other alternative to mitigating their poverty (Millum & Garnett, 2019). To our knowledge, coercion as subjugation has not been discussed in the context of paying people who use drugs for research participation.

1.2. Mitigating exploitation and undue influence with equitable compensation

In contrast, the act of not compensating a person who uses drugs for their participation may be experienced as exploitative, especially among historically underrepresented groups in health sciences research. The practice of offering payment for economically vulnerable research participants promotes fairness and justice in research, as it promotes the representation of such groups in substance use scholarship (e.g., racial, ethnic, and gender minorities) (Bierer, White, Gelinas, & Strauss, 2021; Council for International Organizations for Medical Science, 2016). Rather than assuming that “undue inducement” or “coercion” are inherently a cause for concern, investigators, university finance offices, and IRB members need to be precise about what contextual factors might influence how a certain payment amount or type may be problematic or potentially harmful (Largent & Lynch, 2017). Without such effort or rationale, they may violate the practical principal that compensation represents a fair exchange for participants’ time and contributions to science, especially those that may be disclosing sensitive personal information. As highlighted by Largent and Lynch (2017), the default practice of low or no compensation in clinical research does not necessarily mean that the approach is ethically sound, nor does a higher payment only indicate that a participant will experience undue influence or coercion. In turn, it is more likely that studies will offer a payment that is too low (versus too high), and that concern about specific payments amount could distract from other important study decisions.

Discordant arguments regarding research participant compensation may also reflect different values between research institutions and members of the affected community. People who use drugs engaged in research design as co-researchers have highlighted how limited or inappropriate compensation options for people who use drugs preclude certain individuals from engaging in research, skewing the data towards the economically most vulnerable when payments are too low (aligned with the arguments of Millum & Garnett, 2019 regarding coercion-as-subjection) or the least vulnerable when payments are temporally restricted or limited to gift cards) (Bardach et al., 2023; Collins et al., 2017; Simon et al., 2021). These arguments from people who use drugs suggest that their lived experience is of marketable value to research, that they should receive equitable compensation, and that their agency should be recognized by researchers. People who use drugs have called for living wage-comparable cash payments as a way to increase equity among vulnerable populations (Simon et al., 2021), especially as non-cash incentives (e.g., gift cards, donations) may limit participants to stores that are more expensive, and that they are barred from or do not feel comfortable frequenting. In the end, participants may not be able to fully benefit from the earned incentive (e.g., traded with peer for lower valued amount, purchased few higher priced items at store). To offset concern for skewing of data and research risk exposure towards people who use drugs and who are most economically vulnerable (Gelinas et al., 2018; Resnik, 2015), some scholars recommend that participants do not receive substantial incentives to participate in high risk activities (such as administration of addictive substances) or unhealthy behaviors (such as disincentives to reduce substance use) as part of the study trial (Ostini, Bammer, Dance, & Goodwin, 1993).

1.3. Sufficient compensation strengthens research quality

Empirical studies have been conducted to attempt to clarify these incongruous arguments. Previous studies with randomized compensation amount and types among people who use drugs have found that higher compensation amounts lead to increased follow-up rates and research satisfaction (Festinger et al., 2005; Wilcox, Bogenschutz, Nakazawa, & Woody, 2012). Higher compensation and cash compensation is not associated with increased drug use or perceived persuasion, contradicting commonly cited reasons for lower and non-cash-based incentives for this population (Dempsey, Back, Waldrop, Jenkins, & Brady, 2008; Festinger et al., 2005; Festinger & Dugosh, 2012; Thurstone, Salomensen-Sautel, & Riggs, 2010). Additionally with higher incentives, staff follow up and participant tracking can be reduced, as participants are more likely to remain engaged with the study without as many reminders, offsetting some of the costs and ethical concerns associated with higher payments (Festinger et al., 2005). Overall, unsuitable compensation for research participation among people who use drugs can be practically ineffective as it can alienate certain groups who use drugs and impede study recruitment, and ultimately, delay policy and practice innovation.

2. Introduction to the care ethics framework

In addition to practical considerations about how compensation relates to study quality and participant engagement, care ethics provides a philosophical framework for interrogating the ethical dimensions of research compensation strategies for people who use drugs. Care ethics has previously been used to explore dynamics between research participants, researchers, and ethical review boards (King, 2023; Toombs, Gross, Bardzell, & Bardzell, 2017). Care ethics is a moral theory oriented towards relationships and their embedded contexts. This framework contrasts with other moral theories grounded in abstract and universal principles. Care ethics is suited to participatory addictions research, as its focus on emotionality, responsiveness, and attentiveness provides a useful lens for exploring ethical issues that arise from power dynamics between participants, researchers, and the institutions through which their relationships are mediated (Groot et al., 2019). Care can be understood both as a dispositional attitude and as a set of discrete practices that address both private or personal relationships and extend to issues of democratic citizenship (Tronto, 2013, 2015). Although care ethics is sometimes contrasted with principles of justice and fairness, care can be considered as fundamental to justice: “Principles of right and traditional notions of justice depend upon a prior and more fundamental practice of care” (Kittay, 2019 p. 108). Such an assertion values care both as a virtue of particular private relationships (e.g., intimate partners, children, or friends) and as a virtue of relationships between one’s community, society, or globe in the present moment and as oriented towards the future (e.g., researcher-participant relationship, as well as relationships with the research institution and the local recovery community) (Held, 2018; Stensöta, 2015). The values fundamental to the Belmont Report of justice, beneficence, and autonomy can be anchored in the concern to care for the safety and well-being of populations who are sought for participation in addiction research, many of whom might experience overlapping forms of discrimination, marginalization, or other vulnerability.

2.1. The phases of care

Central to care ethics is the understanding that persons are constituted through their relationships and mutual dependency. Concepts like autonomy are approached from an appreciation of the social context in which control over one’s life is exerted or supported (Gary, 2022). The question of fair compensation for participation in addiction research can be informed by the ethical qualities and practices that are outlined by Tronto (2013) and correspond with different iterative phases of care. First, in selecting the amount and type of compensation, researchers should show attentiveness to the unmet needs of potential participants and assume responsibility to facilitate those needs being met in a capacity that is appropriate for our role as researchers. Rather than taking on responsibility for participants, researchers must recognize participants’ own agency in the study process, including how they decide to spend compensation. Therefore, researchers must competently engage in caring labor and be responsive to participant and the recovery organization’s needs when deciding on participant compensation. It is difficult to assign steadfast guidelines for payment type and amount for clinical research with people who use drugs, (Gelinas et al., 2018), as a $15 cash payment may be suitable for one group of participants, and $20 to a department store for another. The practice of being responsive to community context and participant needs thus allows for researchers to evaluate the sufficiency, success, or completeness of their attempts to show care via participation incentives and regard for the people involved throughout the research process. An additional phase of care emphasizes caring with others, by responding collectively to unmet social needs within a recovery community and working towards a more equitable society.

This final phase preserves the agency of research participants, underscores their active contribution and participation in the creation of knowledge. In response to Millum and Garnett [2019], “caring with” may be a strategy to mitigate perceived coercion in substance use research studies, even in which participants are compensated for their participation, because the wills of researcher and participant are in alignment. A public ethics of care can be applied to further understanding of these institutionally mediated relationships. In this framework, IRB policy goals may include “establishing, nurturing, sustaining, and protecting” relationships due to the fundamental role social relationships play in multiple forms of well-being (Stensöta, 2015). Researchers and IRB members alike may engage members of the population from which participants are sampled into discussions about equitable compensation strategies as a way of establishing, supporting, and sustaining trusting relationships with participants who use drugs. Such engagement could involve meetings with advocacy organizations, consumer/peer-operated services, or bringing together people with lived experience in an advisory board to shape IRB and finance office policies, research aims and protocols.

2.2. Application of the care ethics framework

Ethics of care, if considered only as a framework guiding interactions between individual people, may seem ineffective for responding to institutional questions of compensation for research participation involving individuals who use drugs. IRBs make determinations in advance about the appropriateness of a proposed compensation strategy for all potential participants, which can limit the ways in which researchers can respond to individual participants’ expressed preferences. Engster (2020) ideas on public ethics of care within public bureaucracies can be helpful for understanding care within IRBs, in which attentive, responsive, and competent researchers and IRBs would consider the circumstances of research participants and seek their input when implementing policies. In addition to the above example of engaging members of the affected community to influence the type and amount of compensation received by research participants from that community, researchers may seek to amend study protocols based on systematic feedback from participants to improve engagement.

While such strategies may not immediately meet the research participant’s expressed preferences, effectively demonstrating attentiveness, responsiveness, competent engagement, and caring with others is not necessarily contingent on achieving a particular outcome. There are many times in helping professions where care between a service provider and client is effectively demonstrated even when a satisfactory solution is out of reach due to policy constraints and systemic barriers. For example, when a social worker is unable to provide access to stable housing to a client experiencing homelessness, due to the lack of available housing options in the community (e.g., lack of prioritization of emergency or permanent housing options), the social worker can still demonstrate attentiveness to the client’s need, responsiveness and engagement through attempts to secure resources according to the client’s preferences, and provide what resources are available to maximize safety. In response to participant needs, researchers can coordinate with study sites and community organizations to support access to basic resources. Furthermore, attention to participants’ perspectives on study procedures and compensation strategies could improve the acceptability of research to future participants and show, in advance, care for their potential needs to engage in substance use research.

2.3. Prioritizing the relationship between researchers and community members

Research that advances health equity in the long-term and decreases overdose-related deaths must be reflexive and prioritize the relationship between investigator and community, considering potential long-term impacts of the research on the community and burden to participants who are members of the researched community. Reflexivity, the process of critically evaluating one’s own sociopolitical location, assumptions, and their influence on research decisions and products, has been suggested as an important tool for making ethical research decisions (Guillemin & Gillam, 2004). The phases of care described above can provide a useful set of considerations for deepening researchers’ reflexivity in the evaluation of compensation strategies specifically. Appropriate research compensation can play a positive role for people who use drugs, diversifying their income streams, increasing trust and engagement in research, and reinforcing autonomy and agency in the research enterprise (Abadie et al., 2019; Collins et al., 2017). For example, a study of people who use drugs living with HIV reported research participation felt transactional and impersonal due to lack of respect from researchers when sharing vulnerable experiences (Collins et al., 2017). Gift cards were seen as patronizing, as they did not provide the same agency as cash payments and were often re-sold for lower amounts (Collins et al., 2017). While the gift card incentive may have felt like a less harmful option for promoting potential cravings and short-term use to the researchers, this choice instead resulted in stigmatizing the participant based on their comorbid health issues, harming the researcher- participant relationship. Non-monetary compensation (e.g., a meal, thank you note), as an addition to cash incentive, can improve the relationship between researcher and participant as it shows further appreciation for their contribution (Collins et al., 2017). Positive experiences among people who use drugs can increase interest in participating in future studies, particularly when principles are applied consistently, deconstructing the researcher-community member hierarchy, increasing researcher reflexivity, and highlighting the independence and empowerment of community members (Damon et al., 2017).

3. Examples of care ethics through case studies

Informed by the relational framework provided by care ethics, we offer three questions with illustrative case examples from our own experiences that can guide researchers and their institutions on how to determine appropriate participant compensation among people who use drugs facing intersecting marginalization.

3.1. Does the compensation strategy demonstrate appreciation/thoughtfulness for the participant population?

Participating in research and sharing personal information can be a risky and vulnerable experience, especially for participants who are members of stigmatized or oppressed groups. Participants may have had negative past experiences with researchers, where there was no follow-up after a study or no gestures of appreciation for the sharing of deeply personal and even potentially traumatic experiences. The practice of appropriate participant compensation demonstrates that the community’s well-being is highly considered and that the investigators care about their working relationship with the community. Investigators are stewards of the university as well as the greater field of substance use treatment and recovery. How investigators treat the community is crucial for both the current project and future work. Inconsiderate behavior will likely negatively impact future participation, exacerbating the disparity in recovery research among minoritized populations. In the vignette below, we discuss institutional policies that undermined competently responding to the needs of participants in an evaluation of community-based behavioral health services:

DN¹ was the project evaluator for a program to serve unhoused adults with serious mental illness or co-occurring substance use disorders. The funder, a federal agency, allowed service users to receive a noncash incentive of up to a $30 value for participation in follow up data collection activities, which occurred every 180 days. The funder prohibited providing an incentive for the initial baseline evaluation-related data collection activities. Many participants expressed annoyance at, disagreement with, or lack of understanding as to why they could not receive an incentive at baseline but could receive an incentive six months later for answering a nearly identical set of evaluation questions. Rather than feeling like the evaluation team or funder were taking care not to coerce service users into participating, some participants felt like their time was not valued.

The evaluators, while attentive to participants’ expressed preferences for receiving compensation, were unable to respond effectively to participants due to federal policies governing the use of project funds. The funding restriction to provide compensation for the baseline interview undermined the researchers’ attempt to demonstrate competence in showing careful consideration of participants’ preferences. Institutional barriers to caring with participants are evident in this scenario, as the evaluators were unable to work with the participants to advocate for changes in policy that would have aligned with participant preferences. Although researchers or evaluators may encounter institutional barriers for providing participants’ preferred type of compensation, researchers can be transparent with community partners about these institutional barriers and can work together to provide gestures of appreciation for learning about research activities, irrespective of whether one consents to participate in research or evaluation activities. For example, in-person research activities could include refreshments and non-perishable items that participants can either use immediately or take with them, independent of whether prospective participants ultimately choose to engage in the research activities. For example, investigators may offer safe substance use packets (e.g., fentanyl testing strips, Narcan), water bottles, hygiene kits, and basic clothing items (e.g., socks, gloves). If unsure of what to offer, just ask participants themselves. Aligned with the phases of care, attentiveness and caring with, such items can demonstrate that the researchers are in touch with the basic needs of people who use drugs and that they care about their community’s wellbeing.

3.2. Does the participant population have use for this type of compensation?

Although a research study may be time limited for an investigator, the phenomenon being studied is an everyday reality for the community. For many minoritized communities that continue to experience high rates of overdose, other substance use-related deaths, and low access to services, immediate relief is needed. Financial compensation should convey the high value of the participant’s contributions to the research. The offer of appropriate compensation may level the power dynamic between the participant and investigator/university as both parties’ needs are met. According to people who use drugs, compensation should be provided in the form of cash, and the monetary value should be commensurate with a living wage; the practice of providing gift cards and low-value compensation may convey that the participant and their time are undervalued (Simon et al., 2021). Yet, many research institutions, finance departments, and IRBs have restrictions on the type of compensation that can be given to participants.

BED conducted a study that involved recruiting Black men who used drugs from community settings. Many were transient or unstably housed. The IRB approved providing participants three options: 1) a prepaid debit card; 2) a big box store gift card; 3) cash via CashApp. Overwhelmingly, participants chose CashApp, which allowed the participant to receive compensation immediately and use the money autonomously, without restrictions. However, researchers had to pay participants from their own accounts and be reimbursed by the institution, which caused logistical problems as investigators did not want to financially burden research staff and students conducting participant recruitment. Despite positive participant feedback and IRB approval, shortly before recruitment ended, the institution announced that CashApp payments would not be allowed for participant payments.

In this vignette, institutional barriers to selecting useful forms of compensation impeded researchers’ ability to be responsive to participant and research staff needs. First, the disallowance of CashApp payments prevented researchers from responding to the expressed preference of participants. Secondly, the lack of an institutionally sponsored method to disperse CashApp payments reflects barriers to attending to the needs of research staff (often graduate students), who were temporarily burdened financially as a part of their work role. Lastly, the abrupt ending on CashApp payments negatively complicated the research staff’s ability to care with others, threatening an established shared sense of understanding and trust between researchers and participants aided by compensation. When the institution prohibited CashApp, the cooperative and reciprocal process that the researchers and participants arrived at together was undone, disrupting the trust-building process researchers were establishing with the community and damaging their reputation. In this case, people who use drugs may perceive that researchers are not fulfilling their obligations or remaining true to their agreements, which in turn, relieves people who use drugs of their own agreements and can preclude further academic engagement with this community (Abadie et al., 2019).

BED’s experiences are not unique to one institution as other researchers have previously documented institutional aversion to CashApp and other virtual payment platforms (Brooks & Smith, 2022). Cash payments, whether virtual or paper, are not approved by many IRBs or are not allowed by business offices, limiting options to paper checks, and physical gift cards. In our experience, people who use drugs are often inundated with gift cards to big box stores or prepaid debit cards that have complicated restrictions for use, including potential fees or expiration dates. As has been previously pointed out, these limitations are often based on stigmatizing assumptions that people who use drugs will spend research compensation on drugs (Bell & Salmon, 2012). We argue that how participants use their compensation is their prerogative and in fact, unrestricted funds may provide another avenue of harm reduction, preventing them at least temporarily from engaging in more hazardous methods to cope with symptoms of SUD (Bell & Salmon, 2012). Additionally, previous studies have shown that the majority of participants who use drugs spend cash incentives on bills and household items (Festinger & Dugosh, 2012). As the ethics of care emphasized, researchers must recognize participants’ own agency and be responsive to their wants and needs, which includes acknowledging the limitations of how much responsibility they should exercise in terms of how participants use compensation. While concern for enabling destructive behaviors is valid, participant diagnoses or history should not be the only grounds for deciding compensation (Seddon, 2005). For example, it would likely to considered inappropriate if participants enrolled in a study related to their diabetes diagnosis were denied cash in fear of money spent on unhealthy food choices. To put the ethics of care into practice, investigators, particularly those in leadership roles, must advocate for opportunities to integrate meaningful input from communities being researched to provide guidance on what are equitable and respectful ways for providing compensation.

3.3. Does the participant population have easy access to the compensation?

People who use drugs belonging to minoritized groups may not have the same access to use some common types of compensation. Some people may not have a checking account where they can deposit a paper check and the bank where they can cash the check may require transportation that is also difficult to access (e.g., limited bus schedule, few stops). Similarly, the big box store for the gift card or coupon may not be easily accessible in the community due to systemic disinvestment in neighborhoods that limits access to resources (e.g., historic redlining and racial covenants, White flight, deindustrialization) (Collins et al., 2017; Seddon, 2005). In this vignette, neighborhood deprivation was associated with poverty and a greater proportion of minoritized residents, and also increased density of open-air drug markets, where the drug supply is more unpredictable and deadlier (Wagner, Neitzke-Spruill, Donnelly, O’Connell, & Anderson, 2021). Thus, for the respective study, it made more sense to compensate participants with e-gift cards based on past participants’ feedback and the scale of the study (e. g., multiple sites involving hundreds of participants across an entire state).

E-gift cards may be convenient for participants who have a temporary address that can be used for mail (e.g., a recovery home); yet some people who use drugs struggle with digital literacy and consistent broadband and thus may have challenges with using the e-gift card online. Thus, research teams should be prepared to walk participants through the process of using the e-gift card, as more barriers between the person and the compensation make it less likely that the individual will benefit from the compensation. Such barriers to use can be highly frustrating for people who use drugs who may not have additional funds to purchase items for personal care (e.g. toiletries not offered at a recovery home, snacks, diapers for children).

SSH co-leads an ongoing digital intervention for people who use drugs. The research team partners with various recovery service and treatment facilities across the region. Participants can receive gift cards for completing surveys and providing the research team feedback about the intervention. During a past winter holiday season, many participants were relying on the gift cards to buy presents for their family members. At a local Walmart location some participants encountered difficulty with cashiers accepting their e-gift cards at checkout. During the holiday season, this store was extremely busy, likely limiting the amount of time that cashiers could attend to each customer. The confusion and rejection experiences were very up-setting to some participants. In response, the research team created infographics describing how to use the e-gift cards on-line or in person; they even offered to talk to participants on the phone while at the cash register to address issues in real time. The research team also started to offer potential participants refreshments and hygiene kits when they are conducting study in-person enrollment events in the community.

This vignette highlighted the need for researchers to attend to and respond to the unmet digital literacy needs of participants. The researchers immediately took responsibility for the mishap. They were attentive and responsive to the needs of participants by collaborating with the participants to identify acceptable solutions and by offering and supplies to help address immediate needs. The vignette showed how care was competently provided to participants through successful navigation of community and institutional dynamics. The researchers viewed the challenges to using compensation as a challenge that should be faced collectively by the research team and individuals rather than solely be the burden of the participant. Lastly, the vignette is an example of caring with, as the changes in the study procedure conveyed a longer-term commitment to supporting the needs of the study population and the local recovery community partners, rather than a sole focus on data collection and study completion.

4. Conclusion

Drawing from ethics of care, particularly Tronto’s (2013) modeling of different phases of care, we propose that researchers must evaluate how they compensate their participants to advance equity in substance use recovery and health research and practice. The case vignettes discussed here highlight instances in which institutional or funder policies created potential barriers towards careful consideration of participants’ needs and preferences. Approaching substance use research participation through the lens of care ethics can create opportunities for researchers and key informants in the community to identify strategies for incentivizing research participation that show attentiveness towards the needs of the community being researched and competently responds to participants’ needs to feel valued as part of the generation of new knowledge. Conversations about how compensation conveys appreciation and whether the participants have use for, and access to the compensation can be generated when designing a new study, writing a grant, and submitting a study protocol for IRB review. Ultimately, the optimal type and amount of study compensation is not one size fits all in substance use research, and incentives should vary across study contexts and participant populations.

We acknowledge that the suggested changes will require everyone to reflect on current practices and advocate for systemic changes that represent the best strategies for their participants – us included. The above cases humbly illustrate the challenges that we have faced and the mistakes we have made when using different compensation strategies in three different institutional settings. In many ways researchers, and institutional financial officials must unlearn the “best practices” that aligned any form of compensation with undue influence and coercion, and that were designed to discourage any interpersonal connection with participants. The exercise of applying the four ethical elements (attentiveness, responsibility, competence and responsiveness) to the case vignettes has helped us, the authors, identify what we are doing well and what we need to change in our research practice going forward. Overall, it is important to update academic institutions and funders about these barriers, especially those embedded within the university infrastructure that may be less obvious to administrators, and how they negatively impact meaningful work with the recovery community.

Compensation has the potential to strengthen collaborations between researchers and community members, while demonstrating respect and value of people’s time. When executed poorly, compensation can cause harm and consequently minimize efforts to improve substance use treatment. Given the legacy of structural racism and systemic oppression embedded in the US healthcare system and the loss of people of color throughout the opioid crisis, research activities like compensation are anything but trivial. The missteps of past researchers who did not attempt an apology or repair with communities are still palpable today. Researchers’ decisions about compensation have the potential to contribute to rebuilding trust, as a strong foundation for advancing substance use recovery.