Principles of Community
Empowered Research

Five Questions from the Community to Substance Use Researchers

1. Is your approach trauma informed?
2. Have you considered the unpaid labor that you are asking community members to perform?
3. Are you being tokenistic?
4. Are you making yourselves accountable to the communities that you study?
5. Have you done your homework?

Five Principles with Community Explanations

1. Research should be shaped by both communities and researchers 

What our communities said:
We believe that research is strongest when it is informed by the rich and diverse views of people with lived experiences of substance use, addiction, and recovery. Researcher/community collaboration is not only a matter of equity and social justice, it also produces better research. We understand things about our communities that you likely don’t. We know questions to ask that are not in any books or journals. Our people will talk to us about struggles, joys, and concerns that they rarely share with strangers. As outsiders, you are often only scratching the surface of our complex lives.

The type of research that funders or academic journals prioritize does not always fit with the needs of our advocacy and activism. Don’t assume your credentials give you more knowledge than us. Don’t assume that you have skills we don’t. Don’t assume you know the best questions to ask. Slow down. Get to know us. Listen. Spend time finding out what our organizations and communities need. 

Everything needs to be more transparent. Your research and advocacy agenda needs to be clear and open to feedback. You should be upfront about who is funding you. You should develop plain language summaries of your research protocols, consent forms, and IRB applications. You should do your best to make  these summaries available in the languages of the communities that you are researching. You should be as forthcoming with us about what ethical concerns you foresee and how you plan to address them as you are with your institutions. Please walk community partners patiently through the entire research process. Please trust that, if you take the time and use accessible language, we can understand your research either as collaborators or study participants.

2. Research should be community building and benefit communities 

What our communities said:
We value engaging on many levels: one-off discussions, project consultations, serving as members or organizers of community advisory boards; and acting as research assistants, co-investigators, and co-authors. We value projects that employ people with lived experience in a variety of roles and at more than one stage (conceptualization, research, and interpretation).

We are open to conversations about what projects are viable and will best serve our acute needs and long-term goals. We know that researchers are often scrambling to meet funding deadlines. But coming to us with a fully worked-out project at the last minute is the least useful way to work together. We want you to take some time to get to know our communities and think creatively with us about how your research can be empowering.

We think researchers have a responsibility to invest back into the communities that they study. Research projects can help build the capacity of organizations. They can hire research assistants or consultants from the community. They can help support difficult to fund areas of work. They can help community members develop new skills and open future employment opportunities. They can give organizations from marginalized communities greater visibility and credibility. We want you to consider the long-term impacts and benefits of your research within the communities that you study.
 

3. Research should center marginalized voices

What our communities said:
Stigma, racism, and other forms of power reinforce the idea that the only expert knowledge is academic knowledge. When we engage with state institutions, media, or universities, we are regularly told that the only valuable opinion is credentialed opinion and the only meaningful data are statistical. Our communities are seen as spaces of damage and suffering. Rarely are they celebrated as sites of resilience, insight, love, and creation.

We are frequently invited to be the “voice of lived experience” as window dressing. We say our piece and then nothing changes. There are never tangible results.

As a researcher, you can help make room for us to challenge the ways that we have been silenced, especially in academic spaces. We want to be more than anonymous informants. We want to be recognized as co-producers of knowledge. You can invite us to present with you at conferences. You can credit us as coauthors.

It takes time to learn about the various groups and individuals working within a specific area, but this effort is critical. Hand picking individuals as community voices can be tokenistic. Relying on one or two organizations as the “voice” of the community can confuse those directly affected with the non-profits or activist groups that claim to represent them. This practice can also reinforce racial inequalities, as community organizations are more likely to be led by white, first-language English individuals and whose experiences differ in significant ways from Black, Indigenous, and People of Color. The perspective of people in active addiction is often different from people in recovery or from more functional drug users. Both voices—organizations and diverse individuals with lived experience—are necessary for an honest conversation.

Your research sometimes silos us and falsely places our issues into neat little boxes. Much of what people blame on drugs or addiction can’t be understood without looking at housing insecurity, criminalization of sex work and drug use/selling, racism, a fragmented mental health treatment system, intergenerational and community trauma…. Consider how your research is being attentive to these intersections. 

For many of us, entering elite, largely cisgender and heteronormative, white academic spaces is exhausting, if not painful. This is doubly true for those of us who don’t use English as our first language—and those of us who don’t communicate in English are rarely invited at at all. Are you willing to organize events in our spaces? Are you willing to change the formats of your events to accommodate ways that we may be comfortable speaking and engaging? Are you willing to invite participants who communicate in other languages (including like non-spoken languages such as American Sign Language) and provide translators?

4. Results should be brought back to the community and shared accessibly

What our communities said:
Researchers come into our communities, solicit our time and effort, and then rarely return. It is the exceptional researcher that comes back. We want you to present results to us, ask for help with interpretation, and talk to community members about next steps. We want you to talk with us about making your research results known outside of academic journals and in contexts that are more directly meaningful to us. We want to see that you will sometimes show up for us when you have nothing personally or professionally to gain. We want to know that you see us as more than objects.

5. Community Labor should be fairly compensated

What our communities said:
Lived experience is expertise. Emotional labor requires energy and time. When we are talking with you about your grant idea, recruiting participants, serving on study/community advisory boards, speaking to classes or university events, organizing community-based events, and recruiting participants for your studies, we are doing skilled work that deserves compensation and recognition. We understand that upfront work is sometimes required to develop projects to the point that they are fundable. But whenever possible, we expect to have our time compensated as people with expertise. We get that you can’t guarantee that grant funding will come through in advance. But if we are donating our time to your project, class, grant application, recruiting study participants, etc. in what ways are you supporting us as individuals and organizations in return? Are you compensating us at a rate that genuinely reflects our expertise? Are you paying us in the way that is most useful to us (cash when possible)?

Five Questions from the Community to Substance Use Researchers

1. Is your approach trauma informed? 

What our communities said:
Have you really considered the ways that research can contribute to the individual and collective trauma faced by marginalized communities at all stages—design, recruitment, payment, interviewing, and our representation? Have you made sure that your research staff is adequately trained in trauma informed approaches to conducting research? Have you taken enough time to explain the overall aims of the research project to participants in plain language so that we understand the motivation of your questions? Have you given participants a way to follow up if they are interested in the results?

Are you prepared to offer us resources and support beyond a “business as usual” reference to a phone number or website? Are you leaving space for our emotional response in interviews? Are you taking time to debrief participants at the end of interviews and giving them an opportunity to give feedback on your process? Have you considered whether the questions that you are asking us, which are often intimate and deeply personal, are truly necessary? Have you taken the time to explain to us why they are necessary? Are you paying us at the start of the interview or are you using the implicit threat of non-payment as leverage?

2. Have you considered the unpaid labor that you are asking community members to perform?

What our communities said:
Are you asking for feedback on research design? Are you asking for introductions to individuals, organizations, or communities? Are you asking for help in study recruitment? Are you asking for assistance in promoting your study on social media? Are you new to the fields of substance use, addiction, or recovery and relying on us to help orient you? Are you putting us in a position to unpack the different ways your research might be harmful or traumatizing? Are you asking us to travel to your spaces, neighborhoods, or institutions for meetings? Each of these is work. We may be willing to help you in some or all of these cases if our time is compensated and our inclusion is not tokenistic, but only after consultation. Our time and labor should not be presumed.     

3. Are you being tokenistic? 

What our communities said:
Our definition of tokenism is representation without power. Are you including community members or organizations in a tokenistic or empowering fashion? Are you including people who are the most directly affected or settling on community members or organizations who are the most visible and easy to work with (which often means white and/or English speaking)? Are you including both community organizations, who represent our history and collective experience, and diverse individuals who are currently experiencing what you are researching—whether it is addiction, substance use, insecure housing, racism, or criminalization? Are speaking for us or amplifying our voices?

4. Are you making yourselves accountable to the communities that you study?

What our communities said:
In what ways are you making yourself accountable to the community organizations and members impacted by your research, before, during, and after the conclusion of your project? Are you using community advisories boards or public (non-academic) forums at more than one stage of your project? Are you providing collaborators, research subjects, or the broader community space to provide feedback and engagement while you are performing research? Are you hiring research assistants or consultants from the communities that you are studying? Are you engaging with more than one organization or community space, or are you using a single collaborator as a stand in for us as a group?

5. Have you done your homework?

What our communities said:
Disability justice activists, Indigenous scholars, HIV/AIDS advocates, African American Civil Rights leaders, recovery community organizers, drug user unions, sex workers, and other activist groups have been warning about power differences and the damage that researchers can cause in our communities for decades. (See reading list below.) They have also been imagining more democratic, participatory forms of research. Have you taken time to read their writings? Are you listening to intellectual voices and research frameworks from outside the university? 


Readings to Begin this Conversation

There is a large academic literature on models of community-based research, participatory action research, and co-production in the context of medical research. Instead of beginning with what academics write about community engagement, we suggest researchers read some important pieces, both recent and historical, by voices from outside the university that can serve as an introduction to these discussions. We also wish to gratefully acknowledge the influence of these writers, activists, and organizations on the process of writing this document.

“Research 101: a Manifesto for Ethical Research in the Downtown Eastside"

Urban Survivors Union, “We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers”

Eve Tuck, “Suspending Damage: A Letter to Communities”

Dr. Martin Luther King, jr. “The Role of the Behavioural Scientist in the Civil Rights Movement”

James I. Charelton, Nothing about Us Without Us: Disability Oppression and Empowerment 

Iowa Harm Reduction Coalition, “A Note to Researchers”

“Nothing About Us Without Us—Greater, Meaningful Involvement of People Who Use Illegal Drugs: A Public Health, Ethical, and Human Rights Imperative”

“Towards Reconciliation: 10 Calls to Action to Natural Scientists Working in Canada”

The Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective

South African San Institute, “San Code of Research Ethics”