Proceedings of a Workshop—in Brief

Harm Reduction Services for People Who Use Drugs: Exploring Data Collection, Evidence Gaps, and Research

Proceedings of a Workshop—in Brief

Given the public health emergency posed by drug overdoses, there have been calls for a comprehensive approach to drug policy that would include focusing on reducing harm for people who use drugs (PWUD). To explore data collection efforts, evidence gaps, and research needs for harm reduction for PWUD, the National Academies of Sciences, Engineering, and Medicine hosted a virtual workshop on January 30–31, 2024, sponsored by the Office of National Drug Control Policy (ONDCP), Executive Office of the President.¹ The workshop focused on harm reduction strategies and services that aim to prevent overdose and infectious disease transmission; enhance the health, safety, and well-being of PWUD; and offer low-threshold options² for accessing substance use disorder (SUD) treatment. This Proceedings of a Workshop—in Brief summarizes the presentations and discussions that occurred at the workshop.³Box 1 provides key messages identified by individual speakers about research needs, evidence gaps, and data collection. Alan Leshner, former director of the National Institute on Drug Abuse (NIDA) at the National Institutes of Health (NIH), said ONDCP’s request for this workshop indicates that the federal government understands the importance of taking a public health approach to substance use and addiction. Harm reduction, he explained, describes a range of interventions—medications for opioid use disorder (MOUD), overdose reversal medications (e.g., naloxone), syringe services programs (SSPs), supervised consumption sites, decriminalization, and others—that save lives and help restore individuals to full participation in their families and society.

GOALS AND PRIORITIES OF THE BIDEN ADMINISTRATION

Rahul Gupta, ONDCP director, said that an American dies every 5 minutes from substance use, illustrating the need to revise how the United States responds to the overdose crisis. This is why in 2022 President Biden shifted the national drug control strategy⁴ to focus on people, their health, and two drivers of the overdose crisis: untreated addiction and drug trafficking profits.

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Naloxone availability, SSPs, and drug checking⁵ are now core components of the federal government’s approach to harm reduction. The administration is removing stigmatizing language from federal programs and integrating harm reduction into primary care and other public spaces (e.g., naloxone in safety stations at federal facilities).

Gupta highlighted ONDCP’s partnership with the Department of Transportation to create a non-fatal overdose dashboard that accesses data from 911 calls and emergency medical agencies to create a map showing where drug overdoses are occurring so that localities can best direct their resources. With the Legislative Analysis and Public Policy Association, ONDCP developed model state laws that cover naloxone distribution, SSPs, and drug-checking strips. Further progress addressing the overdose crisis will require research to inform next steps for harm reduction and policy decisions.

PERSPECTIVES ON THE CURRENT AND HISTORICAL LANDSCAPE OF HARM-REDUCTION SERVICES

Scott Burris (Temple University) said that harm reduction efforts have unfolded within—and been limited and often undermined by—the policy of criminalizing drugs. When harm reductionists began SSPs to address the HIV/AIDS epidemic affecting PWUD, they were uncertain if those programs ran afoul of existing laws prohibiting the distribution and possession of drug paraphernalia. States began to enact laws clarifying the legality of SSPs in the 1990s, but the process was slow—11 states still had not taken action by the end of 2021. Furthermore, legislation prohibiting the use of federal funds to buy syringes acted as a barrier to establishing overdose prevention sites. In the early 2000s, states began passing naloxone access laws; after a slow start, all states now have a naloxone access law of some kind.

Burris said that criminalization and harm reduction are contradictory approaches, not mutually supportive policy pillars. Research is needed to show how laws and legal practices shape harm reduction as well as what regulatory systems reduce those harms while limiting iatrogenic harms, he said. Moreover, rigorous legal epidemiology studies can assess policy impact to inform public health approaches.

Daliah Heller (Vital Strategies) said that heightened drug criminalization and systemic social penalties for substance use create structural vulnerabilities to drug-related health harms. They also interfere with efforts to reduce harms by shaping an environment that undermines and even counteracts the intended impact of harm reduction services. Racism and poverty intersect to exacerbate those vulnerabilities. For

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example, racial segregation created communities with poor housing, low levels of employment, and poor educational opportunities, all of which are correlated with a decreased likelihood of treatment success. Racial and ethnic inequities in health care access reduce the use of evidence-based SUD treatment, Heller said.

Heller noted the stigma attached to substance use and the misunderstanding that harm reduction services facilitate substance use have complicated efforts to put policies into place and to fund harm reduction programs. Research shows that harm reduction services are cost-effective and save money, whereas criminalization models increase health care, criminal, and legal system costs and cause premature morbidity and mortality. She said that implementation science can guide and strengthen harm reduction services by identifying how those services can mitigate structural vulnerabilities, and messaging research can help to dispel myths and improve understanding of how services work.

THE EVIDENCE BASE FOR HARM REDUCTION

Nabarun Dasgupta (University of North Carolina) outlined the six questions he asks when assessing the evidence on harm reduction:

1. How directly relevant is the research to policy or program implementation (e.g., research on batch variability and the accuracy of test strips)?
2. Are the data timely and immediately actionable (e.g., studies on overdose that include xylazine)?
3. Are new populations or locations included (e.g., checking street drugs at SSPs or in minoritized populations)?
4. Are methods sophisticated and transparent enough to address confounding and bias (e.g., longitudinal studies on people who reverse multiple overdoses)?
5. Were people with lived experience involved in study design and conduct (e.g., safer smoking studies using pipes designed by participants)?
6. If there is no direct benefit, does the cost of the study justify the expense (e.g., rigorously evaluating decriminalization policies)?

Using this rubric, Dasgupta identified areas with strong evidence. For example, community-based naloxone distribution for overdose prevention has strong evidence supporting it, but no studies support naloxone distribution in schools, though funds are being spent on such distribution. Overdose prevention sites have strong evidence supporting their value, but the evidence comes from only a few locations. Improving epidemiologic studies requires measuring exposure more accurately and building a clearer definition of harm reduction into evaluations, Dasgupta said.

VALUING LIVED AND LIVING EXPERIENCES

Stephen Murray (Boston Medical Center), an overdose survivor, said that lived experience differs from living experience, and the overrepresentation of the former can limit research and program design. Lived experience comes from people in recovery who are generally abstinent, whereas living experience comes from someone with ongoing substance use and potential exposure to overdose or criminalization. Often, voices of people with lived experience are amplified, he said, in part because the consequences of sharing a living experience can be severe, including job loss, involvement with child protective services, or criminalization.

Steve Alsum (Grand Rapids Red Project) said he was fortunate to live in a city with well-established SSPs when he was injecting drugs, but in many places, drug paraphernalia laws and a lack of funding and community support impede providing the sterile syringes that would help PWUD protect their health. Syringe access is a time-tested intervention that prevents disease and is good public health policy, Alsum said, but it is still illegal in many places. Naloxone distribution, drug-checking services, overdose prevention centers, and MOUD are tools for keeping people alive, yet there are barriers to putting these tools into practice in the United States. Alsum stated that shifting the focus of research from individual behavior change to facilitators and barriers to policy change is needed.

David Frank (New York University) said that not involving PWUD in research affects the way that research frames the issues, the conclusions that are drawn,

and the resulting policy and practice-based solutions. Research lacking social context is superficial and often misunderstands the behavior of PWUD and the decisions they make; for example, the literature frames methadone use strictly as a way for people to treat or recover from their addiction, but many people use methadone for more practical reasons, Frank said. Such reasons include avoiding circumstances that may lead to criminalization, searching for drugs, engaging in risk-taking behavior, or overdosing. Incorporating people with lived and living experience into research design and planning promotes studies that meet the needs of people interested in harm reduction services rather than abstinence. Frank recommended employing qualitative and ethnographic methods and supporting PWUD to develop research skills.

Mark Jenkins (Connecticut Harm Reduction Alliance) said that common sense is uncommon in harm reduction because some think the most effective public health responses to substance use are enabling. His organization has distributed more than 1 million syringes, with more than 900,000 being returned. Connecticut once funded his program, but as of January 1, 2024, there is no publicly funded harm reduction program in the state.

Dinah Ortiz (National Survivors Union) shared her experience as a person who had her daughter taken from her due to substance use during pregnancy. Many states have laws that mandate reporting by workers in health care and family services on alcohol or substance use during pregnancy, defining it as child abuse or neglect. As a result, Ortiz said, these systems play significant roles in sustaining the criminalization of substance use during pregnancy.

Caty Simon (National Survivors Union) said that today’s research agenda does not match what frontline harm reductionists need to protect communities because researchers have not included PWUD in developing research questions. A lack of the cultural competence required to interpret findings and sampling problems skewed toward the street-based population plague substance use research. Simon made several recommendations: funding community-driven substance use research that includes incentives to share indirect costs between grantees and subgrantees such as PWUD-led harm reduction programs; implementing federal funding models from other fields in which community-based organizations are grantees; deconstructing the idea that fair compensation for subject labor is coercive; including intersectionality in substance use research; focusing on quality of life rather than risks and harms; considering low-resource community interventions from other fields; investigating how enforcement causes drug-related harms; and a statement of accountability from federal agencies for complicity in drug war–related harms and reparations for those harms.

INTERNATIONAL HARM-REDUCTION PROGRAMS

Marie Jauffret-Roustide (France’s National Institute for Health and Medical Research) said that France’s model focuses on providing widespread access to MOUD: 87 percent of people in France with opioid dependence receive MOUD versus less than 25 percent in the United States. France has one of Europe’s lowest overdose rates, due in part to widespread access to harm reduction services and MOUD, although the absence of fentanyl in France is also a major difference. There are several contributors to the model’s success, she said. The HIV crisis shocked the nation in the 1980–1990s, leading to collaborations among activists, PWUD’s collectives, care providers, researchers politicians, and others to implement harm reduction policies. In addition, France’s welfare system strongly supports harm reduction, making services and MOUD free for people, including those living in precarious conditions, due to sustainable funding. There is far less urine testing in France for people on MOUD, which helps build trust between physicians and PWUD. However, France’s enforcement approach limits the spread of some services such as drug consumption rooms, despite research showing their effectiveness as harm reduction strategies.

Thomas Kerr (University of British Columbia) said that his team’s cohort-based research uses a community-based recruitment approach, reducing the selection bias that arises when researchers sample extensively from one treatment site or program. It also enables before- and-after studies and evaluations of naturally occurring experiments, which randomized controlled trials (RCTs)

cannot. Linking cohort studies to Canada’s extensive administrative health care data strengthens exposure and outcomes findings. He said the outdated hierarchy of privileging evidence from RCTs over other methodologies is challenging for harm reduction research, as is the lack of a suitable research infrastructure and the small scale and reach of many programs.

British Columbia is scaling evidence-based supervised consumption services staffed primarily by people with lived and living experience and in housing environments where PWUD live. Kerr noted that researchers estimate that without scaling these services and others, overdose deaths in British Columbia would have been approximately 2.5 times higher.

Jaime Arredondo (University of Victoria) discussed his community-based work implementing harm reduction strategies in the California–Baja border region, which is characterized by open drug markets, street injections, overdoses, vulnerable populations, violence, and high consumption rates. Arredondo’s team adapted Canadian materials to provide relevant information for people using stimulants, piloted an intervention to test stimulants for fentanyl, and established the first safe consumption sites in Latin America. His team is attempting to expand safe consumption sites into new settings and research new topics, including why people are shifting from injection to smoking. There are important considerations when conducting research in a region with a high rate of violence, Arredondo said, including creating new metrics to emphasize the importance of interventions in such areas.

U.S. FEDERAL HARM REDUCTION RESEARCH AND DATA COLLECTION

Nora Volkow (NIDA) said that the recent acceptance of evidence-based harm reduction is advancing efforts to control and reverse the overdose crisis. Ongoing research aims to understand how to best employ test strips, understand what conditions people use them, and the guidelines needed for their use. Research is needed to understand why some places have discontinued effective SSPs and whether there are more strategic approaches to ensuring that naloxone kits reach those most likely to use them. Overdose prevention centers—an evidence-based intervention that other countries use—need validation in the United States because their effectiveness likely depends on the context in which they are provided.

Volkow said that NIDA is funding a large harm reduction research network⁶ evaluating interventions and novel methods for delivering them, efforts to bring interventions to tribal lands and rural areas, and, ultimately, how to sustain successful interventions by understanding the influence of context on costs and benefits. There are also sensitive issues that research can tackle, including how to provide harm reduction interventions for adolescents and pregnant people.

Yngvild Olsen (Substance Abuse and Mental Health Services Administration [SAMHSA]) said one of SAMHSA’s largest grant programs includes a focus on naloxone saturation. SAMHSA collaborates with state and federal partners to help states think strategically about the data sources they need to understand whom they are not reaching with saturation efforts, about partnerships that need strengthening, and about how to sustain their efforts financially. Olsen said that states have developed innovative methods for distributing naloxone through vending machines, direct mail, and collaboration with SSPs.

Olsen said that states have raised questions requiring further work, such as how to align different data sources, define saturation using accessible data, account for naloxone distributed outside of the usual channels, identify and reach populations at high risk for overdose, and incorporate new opioid overdose reversal medications into their plans. SAMHSA’s grantees have encountered provider and staff stigma around both MOUD and harm reduction and have also encountered challenges getting pharmacies to carry MOUD.

Grant Baldwin (Centers for Disease Control and Prevention [CDC]) said that CDC’s Overdose Data to Action (OD2A) program⁷ supports providers, health

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systems, payers, and employers to partner with public safety and community organizations that support linking people to care, with an emphasis on health equity and reaching populations that have been disproportionately affected by the overdose epidemic. For a subset of jurisdictions supported, CDC is funding biosurveillance to illuminate trends in the illicit drug supply in these communities, and ultimately, provide a more complete picture of the factors surrounding overdose deaths. The OD2A program requires states to use peer navigators and persons with lived and living experience to promote harm reduction and ensure that PWUD can access overdose prevention tools and treatment. CDC’s Combating Overdose through Community-Level Intervention program⁸ provides seed money to test novel strategies for effectiveness.

Workshop participants raised multiple questions related to CDC’s National Harm Reduction Technical Assistance Center (NHRTAC),⁹ including why it was transitioned to a contract mechanism for technical assistance (TA) from a cooperative agreement with harm reduction partners, and what the agency would do to repair relationships with the harm reduction community. Baldwin said that CDC and its federal partners made a strategic decision to shift from a cooperative agreement to a contract to create efficiencies and economies of scale for how they deliver TA. Baldwin said that CDC and its partner agencies aim to ensure that NHRTAC continues to provide quality TA. He also indicated their commitment to listen to the community to ensure that needs are met and the contractor meets contract deliverables.

David Paschane (Indian Health Service [IHS]) said that IHS harm reduction studies address common harm reduction methods and many innovative methods such as opioid prescription tracking, mobile clinics to reach isolated persons, and safe detoxification lodging. Usually, researchers are studying innovative approaches in pilot programs negotiated locally with individual tribes and examining the uptake of tribally accepted methods that have demonstrated efficacy. The tribes are sovereign nations, and IHS must respond to their interests. Research in Indian country involves disparate systems, making data aggregation challenging. Furthermore, this research ought to be local and directed by American Indians and Native Alaskans empowered to lead research in cooperation with tribal leaders, Paschane said.

Gamaliel Rose (Drug Enforcement Administration [DEA]) said that DEA is primarily a data user, but it cannot always access the large amount of available data to inform the public health element of its work to reduce trafficking, availability, morbidity, and death. Sharing data carries risks, given the need to protect sensitive information and not compromise the forensic process. Improving data sharing involves building trust and creating boilerplate memorandums of understanding for easy deployment. DEA can share data, with limitations, on drug seizures and arrests. DEA gathers state and local data through its National Seizure System, although limited participation and non-submission bias leave gaps in the data. DEA is seeking data on mortality and other public health indicators to determine whether its activities reduce drug mortality.

STRATEGIES FOR HARM REDUCTION RESEARCH, IMPLEMENTATION, AND DATA COLLECTION AT THE LOCAL AND STATE LEVEL

Brandon Marshall (Brown University) said that most state, local, and community-based harm reduction organizations lack the means, resources, or capacity to collect and report data. Many approaches at the state and local level focus on process or distributional metrics of harm reduction but not coverage. For example, Maine’s robust, online overdose data hub cannot provide information on who the programs are not reaching, who desperately needs services, and how to shift approaches to meet evolving needs.

Marshall made note of the innovation occurring in harm reduction, particularly around anonymous, low-threshold programs, including mail order services and vending machines. However, the data collected on these innovations are limited, creating challenges for evaluating their long-term effectiveness. Marshall said

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that structural factors such as stigma, laws, and hostile policy environments limit the ability to collect, share, and analyze data and to conduct linked analysis for evaluating longer-term health outcomes. He proposed conducting person-centered harm reduction surveillance and neighborhood-based analyses to evaluate the positive effect of harm reduction programs despite not understanding individual-level outcomes.

Hillary Kunins (San Francisco Department of Public Health) spoke about barriers to implementing harm reduction services that additional data, research, and evaluation could help address. These include local pressures making it hard to preserve or open harm reduction sites, the difficulty recruiting workforce, and the absence of harm reduction as a standard component of substance use care. In addition, rapidly evolving substance use practices can outpace scientific studies that could help support innovative harm reduction approaches. What local governments need, Kunins said, are rapid and hyperlocal data on substance use trends and effective harm reduction strategies, along with data to support workforce recruitment and retention, to determine the scale of harm reduction services needed to have a population effect on overdose and other health outcomes, and to identify the effect of harm reduction policies on reducing overdoses and improving connections to care.

Kunins said that laws can facilitate deploying harm reduction practices. For example, New York State laws enabled New York City to massively increase the distribution of naloxone, facilitate syringe access in places without SSPs, and educate pharmacists about naloxone. In California, a law enabling pharmacists to prescribe buprenorphine facilitated expanding MOUD and harm reduction settings, such as supportive housing in San Francisco.

Erin Russell (Health Management Associates) said that radical neutrality—setting aside one’s own perceptions of the way the world should be and how others should act—benefits harm reduction work by changing power dynamics and making it possible to remove or reduce practices, programs, and policies that no longer help people. Changing times require adaptation, which is critical for achieving health equity and creating room for effective interventions. She recommended conducting research on policy impacts, monitoring the flow of resources to effective solutions, considering new ways of allocating resources, evaluating adjustments to ensure that programs stay true to best practices, and prioritizing health outcomes when evaluating police interventions. She said it is important to convey the message that harm reduction does not ignore the harms of substance use.

Elizabeth Salisbury-Afshar (University of Wisconsin) said that insufficient data are not the major barrier to implementing harm reduction services, but funding and a punitive legal and poorly informed political environment that do not trust or value science are. Harm reduction should embed an approach centering the experiences of PWUD, she said, which involves embracing the inherent value of people; committing to community engagement and community building; promoting equity, rights, and reparative justice; offering accessible and non-coercive support; and focusing on positive change. The polarizing view that harm reduction is the opposite of abstinence or something that someone does when not ready for treatment or abstinence creates challenges when working in a community setting. For her, Salisbury-Afshar said, harm reduction is a continuum of services, tools, and supports that allow people to improve their health and well-being, with abstinence being on one end of that continuum.

Salisbury-Afshar recommended eliminating policies that cause harm and create barriers for evidence-based services, such as the ban on using federal funds to purchase syringes, while enforcing policies that provide protections, such as upholding the Americans with Disabilities Act, which protects the rights of people with SUD to receive MOUD while incarcerated or in skilled nursing facilities. She also recommended embedding harm reduction services into all federally-funded activities related to substance use, such as allowing Medicaid to pay for evidence-based contingency management without requiring waivers.

Joshua Swatek (New Mexico Department of Public Health) agreed that insufficient data are not a major barrier for harm reduction and asked researchers to stop asking so many questions of PWUD. Survey fatigue is real, and asking seemingly irrelevant questions can harm relationships that are vital for a successful program and become a barrier to accessing service. Receiving services should never require participating in data collection, Swatek said, and any collected data should be shared with the community in an easily understandable form.

A. Toni Young (Community Education Group) said that one challenge to addressing the overdose crisis in West Virginia is the decade-long moratorium on methadone treatment program expansion and the limited number of SSPs. She asked politicians in smaller towns and rural communities why they are enacting policies that restrict harm reduction and learned that individual traumas and lived experiences are playing out in their policy choices. Failing to engage MOUD providers in the continuum of care for HIV and hepatitis C has resulted in a significant proportion of PWUD with HIV or hepatitis C failing to visit primary care facilities. A program to train community health workers with lived experience to conduct HIV and hepatitis C screening is getting people to engage in care, first through primary care and then by partnering with MOUD providers.

RESEARCH AND DATA COLLECTION WITH UNDERSERVIED COMMUNITIES

Ricky Bluthenthal (University of Southern California) said that PWUD from historically and contemporarily disadvantaged populations suffer more consequences of increasing overdose mortality, HIV outbreaks, and hepatitis C virus epidemic. U.S. harm reduction programs are places with more prevalent in places with more college-educated people, places with more men who have sex with men, and places where activists help start them. In his experience, programs exist where communities request them, not where data analysis has identified a serious problem in a specific population.

For Bluthenthal, providing harm reduction services is a racial equity issue. Inequities will continue to exist as long as service restrictions continue affecting minoritized populations disproportionately. Improving life for PWUD means listening to them, and most successful strategies (e.g., SSPs and naloxone distribution) are developed by PWUD organizations, not by academia. Looking to affected populations for solutions to their problems is likely to yield effective, practical, and sustainable solutions. Bluthenthal recommended increasing pipe distribution to bring more populations into harm reduction programs, prioritizing SSP access for populations at elevated risk, including rural Black and Latino/a populations in empirical research, collaborating with PWUD to develop interventions for community-based withdrawal management, addressing the stigma and bias among health care providers, and experimenting with approaches such as universal basic income to help PWUD improve their health outcomes. Patient-centered approaches developed collaboratively with PWUD and their communities, Bluthenthal said, are the hallmark of successful harm reduction practices.

Pregnant and Parenting PWUD (PPPWUD)

Tracy Nichols (Lehigh University) said that the dominant narrative about PPPWUD is that they are bad and do not love their children. This narrative generates social and structural stigma that intersects with race, ethnicity, class, sexual orientation, and gender identity to create barriers to accessing and engaging in care. For example, Latina and American Indian and Alaska Native PPPWUD are less likely to receive adequate prenatal care, and Black and Latina pregnant people diagnosed with SUDs are less likely to receive medication in the year before delivery. These topics need further research and quantitative measures specific to PPPWUD, Nichols said. Most studies rely on participants who remain engaged in services, recruiting through sites of reproductive care, SUD treatment, or social services, and are not done in collaboration with directly affected people or recruited from trusted harm reduction spaces.

Nichols said that qualitative studies document a perceived need by many clinicians to protect the fetus or child from the parent, with severe implications for family separation. Research shows that integrated programs and wraparound services providing gender-responsive, trauma-informed care alongside health care and social

services that support PPPWUD’s needs can be effective. However, such programs are rare and mostly inpatient, and some require abstinence and disallow MOUD. These policies leave many without options, Nichols said, given most harm reduction spaces do not accommodate PPPWUD. Research shows that the punitive approaches in some states (e.g., mandated reporting of substance use during pregnancy as child abuse) have more negative outcomes, including increased rates of neonatal abstinence syndrome and foster care placements, and have no meaningful effect on infant mortality. There is also an increased risk of overdose peripartum attributable to limited access to care and child removal.

Gender-Expansive¹⁰ PWUD

Kiku Johnson (Outside In) said that visual cues in harm reduction spaces, including LGBTQI+ pride flags and informational material with which gender-expansive individuals can identify, are affirming and important for helping gender-expansive people feel welcome. Available resources include graphics from the Trans Student Educational Resources program,¹¹ free gender-affirming kits from the Queer Transgender Project,¹² and Aid, Safety, Hygiene kits from I Support the Girls.¹³ LGBTQI+ stickers on staff name tags and having gender-expansive people on staff are also affirming and welcoming, as are gender-affirming data collection procedures and language training. Haven Wheelock (Outside In) said that she is concerned that anti-trans laws will have a significant effect on substance use among the LGBTQI+ community, including leading to the use of illicit medications for gender-affirming care.

PWUD Experiencing Homelessness

Margot Kushel (University of California, San Francisco) said that providing harm reduction for PWUD experiencing homelessness requires understanding the context in which they live their lives. Overdose is a leading cause of death for people experiencing homelessness nationwide. Forced displacement or sweeps of encampments create unpredictability, disrupt survival and substance use routines, and have a large effect on the long-term health of PWUD experiencing homelessness because of decreased access to sterile needles, naloxone, and MOUD. Kushel’s research has found a high prevalence of overdose survival among people experiencing homelessness but a low prevalence of having naloxone and a low engagement with substance use services despite wanting them. She said that restrictions on take-home access of methadone for people experiencing homelessness limit their ability to access MOUD.

Research shows that the Housing First approach, which includes subsidized housing and links to voluntary supportive services, increases the uptake of both harm reduction and treatment, even among those with significant SUDs. However, studies also show an increase in overdoses in supportive housing. Kushel has piloted a program, co-created and led by PWUD, that develops staff and tenant capacity to address opioid-associated overdoses in permanent supportive housing. Growing evidence shows that providing housing for people experiencing homelessness decreases crime and substance use in the community and increases compassion for PWUD experiencing homelessness.

American Indian and Alaska Native Communities

Sharon Day (Indigenous Peoples Task Force) said that American Indian and Alaska Native people are largely invisible in data collection efforts, and data from Minnesota found that overdose mortality was 7 times higher, arrests were 4 times more likely, and convictions 8.5 times more likely for American Indian PWUD than for White PWUD. Day said that the federal government signed more than 500 treaties guaranteeing health care for tribal nations, but those treaties have not been honored. Only 24 of the 574 tribal nations within U.S. borders have harm reduction programs.

Day said that preliminary results from an ongoing survey of American Indian PWUD participating in harm reduction services show that these individuals want MOUD services, but systemic barriers make access

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difficult. For example, programs will deny access to people who have open wounds or whose comprehensive assessment indicates a mental health issue. American Indian culture, Day said, is preventive, but many young people have lost contact with their culture. To reintroduce individuals to their culture, her team hosts a syringe exchange around a fire weekly where people can receive traditional medicine.

OPTIMIZING RESEARCH AND IMPLEMENTATION OF HARM REDUCTION SERVICES

Sarah Brothers (Pennsylvania State University) said that community-driven research with people with living experience can help build trust, can advance knowledge in an ethically appropriate manner, and is important during times of rapidly shifting knowledge and practices resulting from rising fatal overdose risk and emerging drug-related harms. Community-driven research can identify issues researchers do not know about and enable them to pivot from damage-centered research that presents a view of marginalized communities as hopeless.

Brothers suggested research strategies focused on connection, implementation, and dissemination. Connection can be developed between researchers and communities by building long-term relationships, contributing skills to people’s needs outside of research, being transparent about project objectives, supporting flexibility in meeting times and structure, and providing compensation, Brothers said. Implementation strategies, she continued, should strengthen research skills within the community; build on partners’ existing practices; and include low-threshold, inclusive methods which employ co-working practices, care-centered work with space for emotional discussions, community-centered research questions, and engagement throughout the process. She said that dissemination of results ought to occur rapidly, prioritize open access, use accessible language, occur in venues familiar to the community, and support projects tied to the collaborators’ advocacy work. Brothers called for increasing funding for exploratory projects, deeper engagement, collaborator training, and building community organization infrastructure.

Ju Nyeong Park (Brown University) said that drug checking is meant to address unknowns in the illicit drug supply (e.g., dose and purity of fentanyl) that increase the risk of overdose and other drug-related issues. It is also a way to engage PWUD in conversations in non-stigmatized situations and promote connections to care. Drug checking produces positive outcomes, including behavior change, knowledge diffusion, and engagement with services, and it informs public health surveillance and strategies, but it requires funding. She called on federal agencies to revisit federal drug policies and help convince states to allow drug checking. Park said that implementation research needs legal protections for harm reduction organizations and their clients as well as funding and technical assistance. She called for more support for early-stage investigators and studies on racial and gender equity in drug checking, the clinical implications of drug checking, safer opioid and stimulant supplies, and the effects of drug policies and laws on access to substance use services. She and Brothers both recommended applying mixed-methods approaches to harm reduction research.

Alexander Walley (Boston University) said that the number of people at risk for overdose is unknown because the number of PWUD is unknown and the drug supply is dynamic. Many surveys are limited because they rely on self-report in a culture of criminalization and stigmatization. Identifying the unknown PWUD population requires decriminalizing, destigmatizing, and supporting safety practices and measuring outcomes within and across groups to uncover and address inequities. Addressing the problem that many people who overdose were exposed unwittingly to opioids and do not have an SUD requires accessible drug checking, a non-medicalized or commercialized safe drug supply, and harm reduction tailored for people without an SUD, including youth.

Walley said that unwitnessed overdoses account for more than 90 percent of overdose deaths. Solutions include developing titratable naloxone to reduce naloxone-precipitated withdrawal, having rescuers skilled at using naloxone sparing techniques such as administering

oxygen and rescue breathing, increasing in-person and virtual support to augment overdose prevention centers, and supporting universal safety practices such overdose safety and self-care plans. Because MOUD were not developed with fentanyl in mind, innovation is needed to address this challenge. Both Walley and Park were encouraged by the increasing focus on harm reduction and maintenance treatment by some federal agencies (e.g., NIDA and SAMHSA) as opposed to stressing only abstinence.

SCALING HARM REDUCTION RESEARCH, IMPLEMENTATION, AND DATA SHARING

Peter Davidson (University of California, San Diego) said that one gap in harm reduction research concerns the lag between when people first use interventions developed by PWUD and commencing large-scale research evaluating their efficacy and identifying any unintended consequences. He called for NIH to reserve money for evaluating emergent programs to shrink that time lag. A second gap concerns how to respond to community opposition to evidence-based but controversial interventions. Most efforts today occur on an ad hoc basis or without sufficient resources. Other gaps include the lack of real-time evaluation of the effects of criminal justice and law enforcement interventions and research on how best to collect data from and with PWUD while having the least impact on their ability to access services and on service provision. Collecting data from PWUD at service provision sites should be bounded by specific research questions and stop when the questions are answered, he said.

Emmanuel Oga (RTI International) said that one way to strengthen the evidence supporting harm reduction interventions is to integrate data from multiples sources. This is difficult because data collection methodologies, format, quality, completeness, and measurements vary. Data harmonization can enable collaborative data sharing, integration, and analysis across different studies; help identify broader patterns, trends, and outcomes for interventions; and support evidence-based policy making and developing best practices.

Common data elements (CDEs), Oga said, can help standardize measuring research constructs; enable consistent data collection, coding, and classification for data harmonization; facilitate data comparability and interoperability for sharing across different studies; enable meta-analyses and systematic reviews; and support replicating research studies. Existing CDEs are not well tailored for harm reduction research. Steps for implementing harm reduction-specific CDEs for research include identifying topics that would most benefit from CDEs; establishing standards for data collection, processing, and storage; developing collaborative engagement and partnerships among researchers, practitioners, policy makers, and PWUD to ensure that CDEs are relevant and practical; adapting and refining CDEs as new data emerge and harm reduction evolves; and sharing best research practices to encourage broader use of CDEs. Challenges to developing CDEs include reaching consensus on standardization, adhering to strict data governance policies to ensure privacy and confidentiality, and resistance to change. Oga urged researchers to seek funding for CDE integration and demonstrate the cost-effectiveness of standardized data collection.

Hansel Tookes (University of Miami) said that his research shows that opt-out testing significantly increases test uptake at SSPs. CDC has endorsed the opt-out approach to HIV and hepatitis C testing, adding it to the Compendium of Evidence-Based Practices.¹⁴ Tookes’s tele-harm reduction program uses peer-facilitated, on-demand services via telehealth to bring health care to people who inject drugs (PWID). It provides low-barrier access to antiretrovirals and PrEP, MOUD, hepatitis C treatment, mobile phlebotomy, harm reduction counseling, medication management, mental health care, and SUD services, all delivered within an SSP and integrated with providing naloxone and injection equipment. A pilot study found that this approach produced the highest level of viral suppression reported in the literature for PWID. Tookes said that only a minority of SSPs offer HIV and hepatitis C treatment

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or PrEP, a missed opportunity to engage a historically marginalized community. Telehealth is a promising strategy to overcome this gap but requires tailored implementation matching the diversity of SSPs. He said that most SAMHSA harm reduction grants have not reached harm reduction programs.

REFLECTIONS ON RESEARCH NEEDS

Bluthenthal said that research is needed to identify key factors that make harm reduction successful in practice. One characteristic distinguishing the best programs is the capacity of frontline workers to be in solidarity with those using the program. Bluthenthal reiterated Davidson’s call to facilitate the rapid assessment and dissemination of innovative interventions. He requested patience with harm reduction efforts, given the challenges related to treating SUD and devoting resources to address the subsistence issues PWUD face, including violence, housing access, and food insecurity.

Magdalena Cerdá (New York University) identified several priorities for harm reduction research. First, evaluate the effect that state and local laws regulating harm reduction services and penalizing PWUD have on the effectiveness and delivery of services and on health outcomes. Second, determine what types of laws facilitate or constrain the availability, reach, and effectiveness of services and how these laws are implemented and enforced across different populations. Third, adopt an intersectional framework to evaluate equity in harm reduction service reach and effectiveness, to optimally target services to specific populations that are underserved. Fourth, consider harm reduction as part of a broader structural, whole-of-government approach to address the needs of PWUD and ask how public health can work with other services (e.g., nutrition, transportation, child welfare) to reduce barriers to access. Fifth, conduct person-centered harm reduction surveillance and invest in timely, actionable, and local data collection systems to rapidly detect and proactively respond to emergent patterns of drug-related harms. Sixth, create structures and incentives to ensure PWUD are true partners in all phases of research.

Corey Davis (Network for Public Health Law) said that the War on Drugs does what it was designed to do: produce human suffering through criminalization, stigmatization, and discrimination, while also making research more difficult. Though changes are occurring slowly, the nation, states, and localities are still directing their power to create and maintain a permanent underclass of criminalized, stigmatized people who use or have used drugs. He reiterated the complaint that harm reduction is held to a higher evidentiary standard than law enforcement practices and said that researchers and funders can use data to advocate for laws to change.

Ruchi Fitzgerald (Rush University) recommended that SAMHSA’s harm reduction framework should be considered in funding decisions, that those with lived and living experience should always conduct or co-lead research, and that harm reduction should be in every setting, not just health care, to decrease overdose death rates.

Tracie Gardner (Legal Action Center) said that stigma is the operationalizing of discrimination and oppression, making community input into ways to destigmatize and educate through community participatory research essential. She recommended making funding contingent on demonstrating evidence of community engagement, ensuring data collection is not onerous, and returning data to the community in an actionable form. She supported de-implementing ineffective programs and policies, banning law enforcement and carceral approaches until they demonstrate efficacy based on prior data collected, and changing funding mechanisms conceived during the War on Drugs to eliminate the taint of institutional racism and the policies that make saving lives difficult.

Raagini Jawa (University of Pittsburgh) recommended funding research that tests the feasibility and efficacy of programs using health systems and networks, including community pharmacies, federally qualified health centers, and comprehensive primary care, to bring care to PWUD and improve health outcomes, and studying how to build the addiction workforce in non-specialty settings. Dasgupta and Cerdá agreed that integrating harm reduction services into the health system should happen and will require working with payers to cover

services delivered. Increasing and retaining the harm reduction workforce may require boosting wages and providing more support for the trauma experienced.

CLOSING REMARKS

Dasgupta presented three overarching themes the workshop addressed. The first discussed who is not accessing harm reduction services and how that is changing as the drug supply changes and the populations accessing services change. The second dealt with the cost of not providing harm reduction services to the health of individuals and communities, focusing solely on enforcement and reducing the drug supply, and not holding those measures to the same standards of evidence required of harm reduction interventions. The third was the tension between viewing harm reduction through a public health–oriented lens and more liberatory practices, which he believes harm reduction practices and beliefs should include. Lastly, Dasgupta noted two important tools that were not discussed at length during the workshop: meta-analysis and systemic reviews.

As a final comment, Leshner said, “For the first time in my [30 years] experience, the government of the United States appears to have a commitment to harm reduction. The pace is too slow, but lives are being saved and hopefully, more will continue to be saved.”

DISCLAIMER This Proceedings of a Workshop—in Brief was prepared by Joe Alper, Emily Packard Dawson, and Sheena M. Posey Norris as a factual summary of what occurred at the workshop. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

*The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the institution.

The planning committee for this workshop consisted of Alan Leshner (Chair), American Association for the Advancement of Science (Emeritus), National Institute on Drug Abuse (Former Director); Magdalena Cerdá, New York University; Chinazo Cunningham, New York State Office of Addiction Services and Supports; Chin Hwa (Gina) Dahlem, University of Michigan; Nabarun Dasgupta, University of North Carolina; Corey Davis, Network for Public Health Law; Ruchi Fitzgerald, Rush University; Tracie Gardner, Legal Action Center; Helena Hansen, University of California, Los Angeles; Jeffrey Hom, San Francisco Department of Public Health; Kevin Larsen, Optum; Stephen Murray, Boston Medical Center; and Glyceria (Ria) Tsinas, Academy of Perinatal Harm Reduction.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Laura Pegram, National Alliance of State and Territorial AIDS Directors, and Hansel Tookes, University of Miami. Leslie Sim, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator.

SPONSOR This workshop was supported by Office of National Drug Control Policy, Executive Office of the President.

STAFF Sheena M. Posey Norris, Senior Program Officer; Emily Packard Dawson, Program Officer; Kimberly Ogun, Senior Program Assistant; Alexandra Andrada, Program Officer; Aisha Salman, Senior Program Officer; Noah Duff, Associate Program Officer; Kathleen Stratton, Scholar; Christie Bell, Senior Financial Business Partner; Clare Stroud, Senior Director, Board on Health Sciences Policy; and Sharyl Nass, Senior Director, Board on Health Care Services.

For additional information regarding the workshop, visit https://www.nationalacademies.org/harm-reduction.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Harm reduction services for people who use drugs: Exploring data collection, evidence gaps, and research: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27650.

Health and Medicine Division Copyright 2024 by the National Academy of Sciences. All rights reserved.