Prevention in Focus

Spring 2021 

From principle to practice: What does the literature tell us about the engagement of people who use drugs in harm reduction programming?

By Amanda Giacomazzo

Best practices for the design, delivery and evaluation of harm reduction programming include the meaningful and equitable engagement of people who use drugs. This means engaging people who use drugs (including current and past use) in all aspects of harm reduction programing, including design, implementation, delivery and evaluation. People with lived experience have the knowledge and skills required to play a central role in harm reduction programming. This article summarizes available literature and discusses the importance of the meaningful engagement of people who use drugs, sometimes — and controversially — called “peers,” in harm reduction programs. This includes information on the roles that people who use drugs take on in programming, the advantages of their engagement, and barriers and facilitators to their engagement.

What is harm reduction?

There is no single accepted definition of harm reduction. Harm reduction is generally understood to encompass programs, policies and practices that focus on reducing the social, legal and health harms of drug use without requiring people to reduce their drug use or abstain from using drugs, and it informs good public health policy.1 Harm reduction is a movement grounded in social justice and human rights;1 it is built on the belief in, and respect for, the rights of people who use drugs and is centred on their expertise and ongoing involvement.

Central to a harm reduction approach is designing and providing services for people who use drugs that are respectful, dignified, compassionate and caring. To practise harm reduction is to challenge policies, practices and behaviours that are judgmental, stigmatizing or discriminatory.

“Nothing About Us Without Us”

Harm reduction has a long history and began as a grassroots movement. This has led to the development of programs and organizations created “by and for” people who use drugs, often in response to a lack of structural and political support to address certain issues (e.g., HIV, overdose).2 Over time, harm reduction programs have also been taken up by and embedded in public health and community programming. Central to the success of these programs is the meaningful engagement of people who use drugs.

The concept of “nothing about us without us” acknowledges that people who use drugs must be included in the development of policies and programs that affect their lives.3 The ability of people who use drugs to build relationships with their community, as well as their skills and experience, provide needed insights into the development, implementation, delivery and evaluation of harm reduction initiatives that meet community needs. However, people who use drugs have not always been involved in the development of these policies and programs because of stigma and discrimination related to drug use or other marginalizing factors (e.g., homelessness, mental health needs and criminalization).3

Central to the concept of “nothing about us without us” is the right of people who use drugs to play a role in decision-making that affects them directly. For this concept to be realized, the participation of people who use drugs must be meaningful and their knowledge and experiences valued.3,4 The meaningful engagement of people who use drugs has several facets: tokenization is avoided;5,6 community members participate in and/or lead the design, implementation and evaluation of programs;7 and people who use drugs are included in decision-making processes.6 Meaningful engagement also means that people who use drugs choose whether they want to participate, how they are represented and how they engage.7 Engagement must not only be meaningful, but also equitable (e.g., fair pay, appropriate training and support for all workers).  

The roles that people who use drugs have in harm reduction programming

People who use drugs can work in a broad range of roles in harm reduction programs, from providing information to clients and participating on advisory committees, to leading and participating in the governance of community-based programs.8

A systematic review published in 2015 found that people who use drugs often work in the following five roles in harm reduction programs (in order of most commonly to least commonly identified in the literature):8

  • Harm reduction education: including participating in prevention and harm reduction education focused on preventing sexually transmitted and blood-borne infections (STBBIs) (e.g., HIV, hepatitis C, syphilis, gonorrhea), public education (e.g., naloxone training), overdose prevention education and education for clients on the use of harm reduction equipment
  • Direct harm reduction and health services: including distributing harm reduction supplies (e.g., needles and syringes), collecting used harm reduction supplies, responding to overdoses (e.g., administering naloxone), assisting with injections, counselling and treatment, and providing support to healthcare workers
  • Support, counselling and referrals: including facilitating support groups, referring clients to health services, referring clients to HIV testing services, providing peer counselling, accompanying clients to healthcare appointments, encouraging adherence to HIV or hepatitis C medications and providing other social support
  • Research assistance: including study recruitment, consulting on study design and collecting data
  • Advisory committee participation: including advising on health and public policy

The level of engagement across roles can range from low-engagement tasks (e.g., providing information) where people who use drugs have little control over program activities and decision-making to high-engagement tasks where people who use drugs have input into or control over program development and implementation.8 The goal of engagement should be to obtain “meaningful and purposeful input and decision making with peers,” which involves examining how power is distributed.6 Engagement should strive for collaboration and empowerment6 regardless of the role that a peer is playing.

Use of the term “peer”

The peer role is often discussed in the harm reduction literature. A peer is defined as a person with living or lived experience of drug use.5 While this term is widely used, there are several potential issues related to its use, including the potential to “out” an individual’s personal experiences with drug use. 9 This can lead to stigma and discrimination because of the criminalization of drug use. Stigma and discrimination can also lead to the label of “peer” being associated with lower paying jobs with less job security5 and less potential for advancement, because of negative perceptions that people who use drugs are less trustworthy or reliable than other workers.10 It has been suggested that other titles that reflect the work of the peer (e.g., harm reduction worker, outreach worker, program coordinator) may be more beneficial.5 A more recent title proposed in the literature is “experiential workers,”11 which reflects the knowledge, skills and expertise that people who use drugs bring to harm reduction program delivery as workers.

What are the advantages of engaging people who use drugs in harm reduction programs?

There are a variety of advantages associated with the meaningful engagement of people who use drugs in harm reduction programs, including the empowerment of people who use drugs, the ability for programs and organizations to be more responsive to the communities that they serve, and increased feelings of comfort and engagement among people accessing programs.

What benefits do people who use drugs gain from working in harm reduction programming?

People who use drugs who are engaged in harm reduction programs can benefit from positive social and personal, as well as economic outcomes. Working in harm reduction programs provides people who use drugs with a sense of belonging5,11,12 where they can use their expertise to support or mentor other people who use drugs.11,12 It can also create spaces where people who use drugs are colleagues and find a sense of belonging through shared experiences.11 This can lead to improved social outcomes, including increased self-esteem and confidence.5,12,14 Engagement in harm reduction programs has also been shown to increase housing stability and attachment to health services.15

Because of the criminalization of drug use, people who use drugs can face multiple barriers to traditional employment (e.g., criminal records, incarceration and stigmatization).11,12 Employment in harm reduction programs provides an opportunity for people who use drugs to be gainfully employed and acquire new skills,5,9,12,13 which can lead to future employment opportunities.5,12 People who use drugs can also gain a better understanding of how policy is created and become involved in advocacy and policy development processes to make ongoing changes in their communities.12

What benefits do programs, organizations and communities gain from engaging people who use drugs in harm reduction programming?

Ongoing engagement of people who use drugs in harm reduction programming leads to programs that are better able to meet the needs of the communities they serve. When people who use drugs are engaged in programming, they provide local knowledge and help programs to understand the local context.6 This leads to programs that are more responsive to local drug use trends and patterns and community needs7,12 as well as programs that are more relevant to and accepted by the communities that they serve.6,12 Programs and services delivered by people who use drugs have also been shown to be effective at transferring risk reduction knowledge to people who use drugs and reducing the harms associated with drug use, including overdose.13,16,17

Engaging people who use drugs also increases the program’s credibility and legitimacy within the community because it is supported and/or run by community members.6 This type of engagement also shows commitment on behalf of an organization to improving the lives of people who use drugs,12 which can make it easier for a program to establish relationships with the people it is trying to serve.7 In addition, it can create more equal power dynamics between program staff and service users, resulting in fewer negative experiences for people accessing services.15 This can increase the likelihood that people who use drugs will access programs because they create environments that encourage clients to use their services7,13 by bringing an understanding of available community services and resources and how to navigate them. People who use drugs can create a “bridge” between programs and the communities they are trying to serve.11

Programs that employ people who use drugs can increase clients’ comfort level discussing their personal lives7,13 and increase their feelings of safety.16 Engaging people who use drugs in harm reduction programming can also contribute to reducing the stigma and shame associated with drug use for program users7,16 and can increase clients’ feelings of self-worth7 and belonging.11

What are the barriers and facilitators to engaging people who use drugs in harm reduction programming?

Barriers

Criminalization and stigma

The criminalization of people who use drugs 8 and the resulting stigma and discrimination experienced by people who use drugs8,9 remain large barriers to engaging them in the design, implementation, delivery and evaluation of harm reduction programming. The criminalization of drug use leads to threats of arrests,8,12 and stigma and discrimination can cause people who use drugs to distrust the healthcare system9 because they do not feel safe or respected. This can make it difficult to engage people who use drugs in harm reduction programming.

The overdose crisis and burnout

Canada is in the midst of an overdose crisis. Between January 2016 and June 2020 more than 17,600 Canadians died from an overdose.18 People who use drugs are often on the front line of the overdose crisis. Responding to overdoses is stressful and made even more difficult by the fact that people who use drugs are often responding to overdoses of people with whom they have a personal relationships.19 Burnout is common as a result of the demanding nature of the work20 and can result in a sense of burden, fear, anger14 and grief.13 There is a need for organizations to recognize the effects that the overdose crisis has on workers and to provide ongoing support.2

Employment and pay equity

The employment of people who use drugs in harm reduction programs is often precarious; this type of work often involves casual work arrangements, job instability and insecurity and insufficient wages.2,21 In addition, there are often few employment benefits such as paid sick days.20 People who use drugs who are employed in harm reduction programming should be recognized for their skills and experiences, and hold roles equal to other staff at an organization. 

It is widely accepted that people who use drugs should be paid fairly for their work.5,6,22 The compensation approach (e.g., frequency, amount) needs to be set out clearly for workers.6 Compensation for people with lived experience should be equitable to compensation for other staff in similar roles. People who use drugs should be consulted about when and how they wish to be paid,22 and organizations should be flexible in meeting their needs. However, policies that lead to underpayment of people who use drugs for their work8 or lack flexibility in how they are paid9 still exist.

Organizational policies and procedures

Negative organizational attitudes related to the value of harm reduction programming or the ability of people who use drugs to contribute to programs can negatively affect the ability of an organization to meaningfully engage people who use drugs.8 Organizations may have prohibitive employee policies around drug use in the workplace (e.g., abstinence from drug use as a requirement for employment)8,11 or they may have policies that restrict the ability of employees to receive services from organizations where they are employed, 23 which can exclude people who use drugs from employment. Hiring only people who use drugs who fit into an organization’s current structures (e.g., have more stability) can also be a limiting factor.2 Another barrier is a lack of organizational support12 and training8 for all staff about discrimination and stigma, harm reduction principles, the importance of engaging people who use drugs, and grief and loss.

Individual barriers

Competing life priorities9 (e.g., a lack of access to child care), low literacy levels6 and a fear of being “outed” during their employment, which may be particularly relevant in smaller communities,9 can affect the ability of people who use drugs to engage in harm reduction programming. Organizations should work to accommodate for these factors (e.g., providing training materials that accommodate for various literacy levels, providing childcare for workers). A variety of factors related to the social determinants of health (e.g., housing) can create individual barriers that can make engagement of people who use drugs difficult. Organizations need to acknowledge and work to address the larger social factors that affect a persons’ ability to consistently and reliably participate in employment.8

Facilitators

There are many ways to facilitate engagement of people who use drugs in harm reduction programming, including:  

  • creating low-threshold environments where employment in programs does not require abstinence from drug use15
  • providing work environments and programs that are able to meet the diverse needs of diverse people who use drugs, that have flexible hours of operation and ways of delivering services and that recognize the importance of addressing broader structural issues associated with drug use8 (e.g., the criminalization of drug use)
  • having people who use drugs in roles across an organization including front-line, management and governance roles8
  • providing people who use drugs with supervisors who are knowledgeable about harm reduction principles and the supports people who use drugs may require,9 including supports to address burnout in the workplace. Supervisors that provide clear expectations and who are flexible,12 approachable and give staff opportunities to learn in a supportive environment are important10
  • providing people who use drugs7 and other program staff12 with adequate training (training can include topics such as harm reduction principles and philosophy, as well as training in cultural safety and trauma-informed care principles;6 training in areas such as self-care and boundary setting can also be important as boundary issues can arise when workers provide services to their friends and community members12,24)
  • paying people who use drugs fairly for their work and expertise. Providing equitable pay may help to mitigate stigma that people who use drugs face in the workplace9
  • gaining support from the local community, including local government and police, and having a local health authority that recognizes the value of engaging people who use drugs in harm reduction programming8

What does this mean for harm reduction programming?

Best practices for the design, delivery and evaluation of harm reduction programming include the meaningful and equitable engagement of people who use drugs. When organizations engage people who use drugs, potential barriers such as stigma and discrimination, burnout, employment and pay equity issues, as well as organizational policies and procedures need to be thought through and addressed at the onset of program development and in an ongoing manner. Furthermore, understanding how stigma and discrimination as a result of criminalization of drug use affect the way that people who use drugs access health services is also essential.

Some actions that harm reduction programs can take in their work to facilitate the meaningful and equitable engagement of people who use drugs in harm reduction programming include the following:6

  • providing adequate training for people who use drugs as well as other staff at the organization on how to engage people with lived or living experience, as well as on harm reduction and trauma-informed principles
  • providing workers with fair compensation for their work
  • remembering that the experience of each person who uses drugs is different and there is no one approach that will address all of the potential barriers that they may face
  • recognizing that power imbalances exist within an organization and working toward addressing these imbalances through policies that support people who use drugs and their unique experiences (e.g., policies related to drug use while employed, past criminal records and flexible work environments)
  • having regular check-ins with and providing ongoing support to help workers in their current role, as well as with potential advancement

Meaningfully and equitably engaging people who use drugs in harm reduction programming has many benefits for the person, program and organization as well as for the community that a program is trying to reach. Realizing these benefits requires organizational support at all levels and support from the broader community.

Related resources

Hepatitis C treatment in harm reduction programs for people who use drugs

Harm Reduction Peer Backpack and Vending Machine Project

Practice Guidelines in Peer Health Navigation for People Living with HIV

Peer outreach point-of-care testing for hepatitis C

References

  1. Harm Reduction International. What is harm reduction? 2020. Available from: https://www.hri.global/what-is-harm-reduction
  2. Michaud L, Maynard R, Dodd Z et al. Recognition, exploitation, or both? A roundtable on peer labour and harm reduction. In: Smith C and Marshall Z, editors. Critical Approaches to Harm Reduction: Conflict, Institutionalization, (De-)Politicization, and Direct Action. Hauppauge (NY): Nova Science Publishers; 2016.
  3. Canadian HIV/AIDS Legal Network. “Nothing About Us Without Us.” Greater, meaningful involvement of people who use illegal drugs: a public health, ethical and human right imperative. Toronto: Canadian HIV/AIDS Legal Network; 2005. Available from: http://www.hivlegalnetwork.ca/site/wp-content/uploads/2013/04/Greater+Involvement+-+Rpt+-+Drug+Policy+-+ENG.pdf
  4. Canadian HIV/AIDS Legal Network, International HIV/AIDS Alliance, Open Society Institute and International Network of People Who Use Drugs. Nothing About Us Without Us: a manifesto by people who use drugs. Toronto: Canadian HIV/AIDS Legal Network, International HIV/AIDS Alliance, Open Society Institute and International Network of People Who Use Drugs; 2008. Available from: https://www.opensocietyfoundations.org/uploads/b4f8fd79-25a5-46d7-99ab-b51b4563f980/nothing-about-us-without-us-manifesto-20080501.pdf
  5. Canadian AIDS Society. Peerology: a guide by and for people who use drugs on how to get involved. Ottawa: Canadian Aids Society; 2015. Available from: http://librarypdf.catie.ca/ATI-20000s/26521E.pdf
  6. Greer AM, Amlani AA, Buxton JA et al. Peer engagement best practices: a guide for health authorities and other providers (version 2). Vancouver (BC): BC Centre for Disease Control; 2017.
  7. United Nations Office on Drugs and Crime, International Network of People Who Use Drugs, Joint United Nations Programme on HIV/AIDS, United Nations Development Programme, United Nations Population Fund, World Health Organization, United States Agency for International Development. Implementing comprehensive HIV and HCV programmes with people who inject drugs: practical guidance for collaborative interventions. Vienna: United Nations Office on Drugs and Crime; 2017.
  8. Marshall Z, Dechman MK, Minicheiello A et al. Peering into the literature: a systematic review of the roles of people who inject drugs in harm reduction initiatives. Drug and Alcohol Dependence. 2015;151:1-14.
  9. Greer AM, Amlani AA, Burmesiter et al. Peer engagement barriers and enablers: insights from people who use drugs in British Columbia, Canada. Canadian Journal of Public Health. 2019;110:227-235.
  10. Broad J. Personal communication about the engagement of people who use drugs. 2021 Jan. 
  11. Pauly B, Mamdani Z, Mesley L et al. “It’s an emotional roller coaster…But sometimes it’s fucking awesome”: meaning and motivation of work for peers in overdose response environments in British Columbia. International Journal of Drug Policy. 2021;88:103015.
  12. Balian R, White C. Harm reduction at work: a guide for organizations employing people who use drugs. New York (NY): Open Society Foundations; 2010.
  13. Kennedy MC, Boyd J, Mayer S et al. Peer worker involvement in low-threshold supervised consumption facilities in the context of an overdose epidemic in Vancouver, Canada. Social Science Medicine. 2019;225:60-8.
  14. Wagner KD, Davidson PJ, Iverson E et al. “I felt like a superhero”: the experience of responding to drug overdose among individuals trained in overdose prevention. International Journal Drug Policy. 2014;25(1):157-65.
  15. Penn R, Strike C, Mukkath S. Building recovery capital through peer harm reduction work. Drugs and Alcohol Today. 2016;16(1):84-94.
  16. Bardwell G, Kerr T, Boyd J et al. Characterizing peer roles in an overdose crisis: preferences for peer workers in overdose response programs in emergency shelters. Drug and Alcohol Dependence. 2018;190:6-8.
  17. Jogazi E, Lampkin H, Andresen MA. Peer-engagement and its role in reducing the risky behavior among crack and methamphetamine smokers of the Downtown East Side community of Vancouver, Canada. Harm Reduction Journal. 2016;13(19).
  18. Special Advisory Committee on the Epidemic of Opioid Overdoses. Opioid- and stimulant-related harms in Canada. Ottawa: Public Health Agency of Canada; 2020. Available from: https://health-infobase.canada.ca/substance-related-harms/opioids-stimulants/
  19. Kolla G, Strike C. “It’s too much, I’m getting really tired of it”: overdose response and structural vulnerabilities among harm reduction workers in community settings. International Journal of Drug Policy. 2019;74:127-35.
  20. Olding M, Boyd J, Kerr T et al. “And we just have to keep going”: task shifting and the production of burnout among overdose response workers with lived experience. Social Science & Medicine. 2021; 270:113631.
  21. Greer A, Bungay V, Pauly et al. ‘Peer’ work as precarious: a qualitative study on work conditions and experiences of people who use drugs engaged in harm reduction work. International Journal of Drug Policy. 2020;85:102922.
  22. Becu A., Allan L. Peer payment standards for short-term engagement. Vancouver (BC): BC Centre for Disease Control; 2017. Available from: http://www.bccdc.ca/resource-gallery/Documents/Educational%20Materials/Epid/Other/peer_payment-guide_2018.pdf
  23. Ontario Organizational Development Program. 2020. Substance Use Policy Guide & Template for AIDS Service Organizations. Available from: https://oodp.ca/media/woocommerce_uploads/OODP-Substance-Use-Policy-Guide-for-ASOs-May-2020-fbdmgq.pdf
  24. Penn R, Mukkath S, Henschell C et al. Shifting roles: peer harm reduction work at Regent Park Community Health Centre. Toronto: Centre for Addiction and Mental Health; 2011.

About the author(s)

Amanda Giacomazzo is CATIE’s manager, community programming. Amanda holds a Master’s degree in health science with specialised training in health services and policy research. She has previously worked in knowledge translation and public health at the provincial level.