Session Proposals
Below is an archive of the unconference website prior to the event held on Tursday, March 7, 2024.
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PROPOSE A SESSION
How can I propose sessions?
UPDATE: ACCEPTING IN-PERSON ONLY FROM HERE ON OUT. Participants can submit topics that they want to discuss in advance, by email, phone, or in-person at the start of the event on March 7th. We are also planning a pre-workshop to brainstorm topics and show folks how to submit proposals.
Session Proposals So Far
We are presenting proposals as we have received them from community organizations and members without editing. In some cases, they include language that may be considered stigmatizing.
State standards for substance use research compensation
Community members and organizations have consistently made a set of demands about compensation for research. We want to be paid in cash. $50 an hour is an appropriate value for our time given the types of painful issues we are asked to discuss. We should be paid at the beginning of interviews, not the end (which is coercive). There needs to be support available to us if we are triggered in interviews. The best researchers in RI do all of these things. What would it take to articulate a state-wide set of standards around compensation?
Community members and organizations have consistently made a set of demands about compensation for research. We want to be paid in cash. $50 an hour is an appropriate value for our time given the types of painful issues we are asked to discuss. We should be paid at the beginning of interviews, not the end (which is coercive). There needs to be support available to us if we are triggered in interviews. The best researchers in RI do all of these things. What would it take to articulate a state-wide set of standards around compensation?
Who is excluded from harm reduction?
Sex work and intersectionality in substance use research
Sex workers are integral to harm reduction as a community based practice. Sex workers have always existed at the forefront in community spaces as connectors and strong advocates for harm reduction in communities of people who use drugs, HIV/AIDS activism, and queer/trans activism. As we see the public health-ification of harm reduction as an institutional practice more and more we see sex workers excluded from the conversation. So much of the funding allotted to studying sex work minimizes the nuance and complex idea of sex work to grants around disease transmission. How do we create space for a deep and ongoing conversation between sex work activism, sex work research, and substance use researchers? How do we build conversations that reflect the complexity of people’s multiple identities when the grants are asking us to put people into boxes?
Sex work and intersectionality in substance use research
Sex workers are integral to harm reduction as a community based practice. Sex workers have always existed at the forefront in community spaces as connectors and strong advocates for harm reduction in communities of people who use drugs, HIV/AIDS activism, and queer/trans activism. As we see the public health-ification of harm reduction as an institutional practice more and more we see sex workers excluded from the conversation. So much of the funding allotted to studying sex work minimizes the nuance and complex idea of sex work to grants around disease transmission. How do we create space for a deep and ongoing conversation between sex work activism, sex work research, and substance use researchers? How do we build conversations that reflect the complexity of people’s multiple identities when the grants are asking us to put people into boxes?
Researchers are often just jerks
There are power imbalances between “the researcher” and “the researched.” Ways that researchers assert dominance (language, clothing, times, etc) disempower community members and can make them feel unsafe, undervalued, unequal, and disrespected. How can researchers develop a practice of mutual respect and align on shared values with the community members they engage with?
There are power imbalances between “the researcher” and “the researched.” Ways that researchers assert dominance (language, clothing, times, etc) disempower community members and can make them feel unsafe, undervalued, unequal, and disrespected. How can researchers develop a practice of mutual respect and align on shared values with the community members they engage with?
Consent currently is bullshit
Consent is supposed to be the basis for ethical research. But most consent forms are wordy legalese that few participants can understand and they almost never do a good job of clearly explaining the purpose or rationale for the study. “Informed consent” has become an empty ritual. WTF.
Consent is supposed to be the basis for ethical research. But most consent forms are wordy legalese that few participants can understand and they almost never do a good job of clearly explaining the purpose or rationale for the study. “Informed consent” has become an empty ritual. WTF.
Troubling the idea of safety
When we conceptualize safety in research settings, whose comfort is prioritized and how do the notions of safety in research communities contribute to stigma related to people who use drugs, unhoused people, and people experiencing mental illness? When researchers establish safety protocols and facilitate deescalation trainings, how do we ground ourselves in the existing power dynamics that are innate to researcher participant dynamics and how do we insure that ideas of “safety” are not being used to enforce fragility and privilege that are grounded in broader stigma and white supremacy?
When we conceptualize safety in research settings, whose comfort is prioritized and how do the notions of safety in research communities contribute to stigma related to people who use drugs, unhoused people, and people experiencing mental illness? When researchers establish safety protocols and facilitate deescalation trainings, how do we ground ourselves in the existing power dynamics that are innate to researcher participant dynamics and how do we insure that ideas of “safety” are not being used to enforce fragility and privilege that are grounded in broader stigma and white supremacy?
Employing peers as skilled research team members
In most cases, people with lived experience are merely research subjects. Though we may occasionally be compensated for our time being studied, we are almost never invited into the actual process of research. Stigma dictates that we do not have anything to offer other than our woundedness, trauma, and struggle. We are not considered valuable or skilled enough to be engaged or employed at any other level of the research process unless we happen to be peers AND have had the privilege of attaining master's degrees and PhDs — a relatively rare combination.
In order to ensure research is culturally responsive, reaching the people most impacted, engaging in ethical ways of gathering information through using population-appropriate storytelling methods, and truly centering the people the researchers purport to care about, people with lived and especially living experience should be employed as consultants directly involved with the entire scope of the project with real and tangible power and never as mere tokens. This includes people who use drugs, from whom we may have the most to learn if we learn how to truly listen to and respect them.
In most cases, people with lived experience are merely research subjects. Though we may occasionally be compensated for our time being studied, we are almost never invited into the actual process of research. Stigma dictates that we do not have anything to offer other than our woundedness, trauma, and struggle. We are not considered valuable or skilled enough to be engaged or employed at any other level of the research process unless we happen to be peers AND have had the privilege of attaining master's degrees and PhDs — a relatively rare combination.
In order to ensure research is culturally responsive, reaching the people most impacted, engaging in ethical ways of gathering information through using population-appropriate storytelling methods, and truly centering the people the researchers purport to care about, people with lived and especially living experience should be employed as consultants directly involved with the entire scope of the project with real and tangible power and never as mere tokens. This includes people who use drugs, from whom we may have the most to learn if we learn how to truly listen to and respect them.
Work with us to come up with ideas!
It’s a cliche: researchers showing up at community organizations that they barely know to ask them to sign onto grants as community partners at the last possible minute. But this cliche is how it often works in real life. The researcher’s idea is often out-of-touch, it doesn’t reflect community needs or experience, and it is often unfeasible in practice. Resource-strapped community organizations feel a lot of pressure to build alliances, obtain funding support, and try to make these ideas work. 9 times out of 10, it costs the community organization more than they gain. Community organizations often have questions that they want the answers to, but they do not have the capacity or the time to write research grants themselves. THIS HAS BEEN GOING ON FOREVER AND EVERYONE KNOWS.
Researchers, what will it take to get you to work with us and develop ideas together in a genuinely collaborative manner? It is only when researchers spend enough time with, and listen to, community orgs, without asking for anything in return, that they will develop relationships strong enough for orgs to trust researchers to work on a project that the community has identified.
It’s a cliche: researchers showing up at community organizations that they barely know to ask them to sign onto grants as community partners at the last possible minute. But this cliche is how it often works in real life. The researcher’s idea is often out-of-touch, it doesn’t reflect community needs or experience, and it is often unfeasible in practice. Resource-strapped community organizations feel a lot of pressure to build alliances, obtain funding support, and try to make these ideas work. 9 times out of 10, it costs the community organization more than they gain. Community organizations often have questions that they want the answers to, but they do not have the capacity or the time to write research grants themselves. THIS HAS BEEN GOING ON FOREVER AND EVERYONE KNOWS.
Researchers, what will it take to get you to work with us and develop ideas together in a genuinely collaborative manner? It is only when researchers spend enough time with, and listen to, community orgs, without asking for anything in return, that they will develop relationships strong enough for orgs to trust researchers to work on a project that the community has identified.
Internal accountability for substance use researchers
Because substance use, harm reduction, and recovery researchers are spread across multiple institutions in RI, there is no internal organization or accountability. As a result, researchers enter the field with little knowledge of work that has already been done with the community and the community’s long history working with researchers, both positive and negative. The result is often duplicating each other’s efforts, multiplying demands on community organizations, and making the same mistakes repeatedly. This is especially true of out-of-state “helicopter” researchers. Community organizers are angry enough with the overall situation that the idea of a “blacklist” of some researchers is being raised. There needs to be something like an “organization of substance use researchers” in Rhode Island for internal coordination among researchers and accountability. Otherwise all of the work of trying to hold researchers accountable falls to the community, and the researchers and research organization involved in the most problematic practices simply ignore these efforts.
Because substance use, harm reduction, and recovery researchers are spread across multiple institutions in RI, there is no internal organization or accountability. As a result, researchers enter the field with little knowledge of work that has already been done with the community and the community’s long history working with researchers, both positive and negative. The result is often duplicating each other’s efforts, multiplying demands on community organizations, and making the same mistakes repeatedly. This is especially true of out-of-state “helicopter” researchers. Community organizers are angry enough with the overall situation that the idea of a “blacklist” of some researchers is being raised. There needs to be something like an “organization of substance use researchers” in Rhode Island for internal coordination among researchers and accountability. Otherwise all of the work of trying to hold researchers accountable falls to the community, and the researchers and research organization involved in the most problematic practices simply ignore these efforts.
Harm reduction in the 4th wave of the opioid epidemic: What needs to change?
Current harm reduction tactics were largely developed during the second and third waves of the opioid epidemic. A we enter the fourth wave, what do we need to be doing differently? How do we redefine the community? How has the community redefined itself? How do we conduct research in a way that reaches this community more effectively, rather than doing what the researcher is most comfortable with? Why is this important to rethink?
Furthermore, what should be the focus of harm reduction during the fourth wave? Reversing overdoses, or preventing overdoses? What does this look like?
Current harm reduction tactics were largely developed during the second and third waves of the opioid epidemic. A we enter the fourth wave, what do we need to be doing differently? How do we redefine the community? How has the community redefined itself? How do we conduct research in a way that reaches this community more effectively, rather than doing what the researcher is most comfortable with? Why is this important to rethink?
Furthermore, what should be the focus of harm reduction during the fourth wave? Reversing overdoses, or preventing overdoses? What does this look like?
Are researchers and the community on the same page about harm reduction outcomes?
People in the community want people in addiction to find recovery and for most people that means stopping using. That’s what most families want. That’s what most neighbors want. That can’t be dismissed only as stigma. That’s about how other people’s substance use impacts their lives. Researchers seem to be focussed more and more on the outcomes desirable to people who are actively using. But isn’t the picture more complex? What about the outcomes desirable to the other people in their lives?
People in the community want people in addiction to find recovery and for most people that means stopping using. That’s what most families want. That’s what most neighbors want. That can’t be dismissed only as stigma. That’s about how other people’s substance use impacts their lives. Researchers seem to be focussed more and more on the outcomes desirable to people who are actively using. But isn’t the picture more complex? What about the outcomes desirable to the other people in their lives?
Authorship beyond the academy
Inclusion of community collaborators in writing for publication.
This session will focus on generating conversation about inclusion of folks outside of the academy in the authoring of research findings, commentaries, and editorials, in published journals and other written forms of communication. What has worked well in the past for folks who have published in this way? What remains to be refined? How do we reinvision research interpretation and dissemination in written media and think beyond publication in peer reviewed journals?
Inclusion of community collaborators in writing for publication.
This session will focus on generating conversation about inclusion of folks outside of the academy in the authoring of research findings, commentaries, and editorials, in published journals and other written forms of communication. What has worked well in the past for folks who have published in this way? What remains to be refined? How do we reinvision research interpretation and dissemination in written media and think beyond publication in peer reviewed journals?
Harm reduction
How can we get active addicts to get the help they need? What can we offer them so that he/she can get themselves in recovery?
How can we get active addicts to get the help they need? What can we offer them so that he/she can get themselves in recovery?
Research for practical implementation in organizations
As someone who has worked in the direct services and on the front lines, community organizations are of course, stretched thin. Data collection might be happening, but analysis is not a priority, as stated in the principles, most impacted people have the best insight in what research should be done. How can that be reality? How can researchers be better integrated into the organizations doing the work, so they can not only listen for research ideas, but also design and plan for implementation with the organization? How can research be a part of the organizations’ overall system instead of a seperate facet sitting upon the ivory towers, detached from reality?
As someone who has worked in the direct services and on the front lines, community organizations are of course, stretched thin. Data collection might be happening, but analysis is not a priority, as stated in the principles, most impacted people have the best insight in what research should be done. How can that be reality? How can researchers be better integrated into the organizations doing the work, so they can not only listen for research ideas, but also design and plan for implementation with the organization? How can research be a part of the organizations’ overall system instead of a seperate facet sitting upon the ivory towers, detached from reality?
“Is that necessary?”
Balancing the collection of study specific data with respecting the dignity of study participants.
Often, studies ask participants unnecessarily invasive and traumatizing questions, with no clear reasoning or purpose behind them. If you’re seeking data on substance consumption, WHY is it required that you inquire about a person’s sexual habits? Are you clearly explaining the purpose of the questions? Are you speaking from a place of empathy? Is there a sense of cooperation, or are participants treated like “lab rats”? Are individuals of the demographic set that you are seeking to study, included in the process as consultants? Once we delve into these factors, how do we address them in a meaningful way that can benefit participants, as well as gather necessary data?
Balancing the collection of study specific data with respecting the dignity of study participants.
Often, studies ask participants unnecessarily invasive and traumatizing questions, with no clear reasoning or purpose behind them. If you’re seeking data on substance consumption, WHY is it required that you inquire about a person’s sexual habits? Are you clearly explaining the purpose of the questions? Are you speaking from a place of empathy? Is there a sense of cooperation, or are participants treated like “lab rats”? Are individuals of the demographic set that you are seeking to study, included in the process as consultants? Once we delve into these factors, how do we address them in a meaningful way that can benefit participants, as well as gather necessary data?
How can we make research more relevant to the community?
Time and again, community members say that they don't see how research is relevant to them.
There are good examples nationally of research centers that find ways to do basic research, such as cancer research, in ways that immediately engage and impact the community. They also find ways to ensure that programs and interventions, like drug checking, introduced by researchers are sustained after the project ends. How do we bring more of this culture to Rhode Island?
Time and again, community members say that they don't see how research is relevant to them.
- Some of this is about information. Often community members don't know what research is being done in their communities and within the organizations where they work.
- Some of this is about researchers not doing enough to bring results back to the community.
- Some of this is about what gets researched. Often research topics don't reflect what communities see as most pressing, and community members have little say over what gets researched.
There are good examples nationally of research centers that find ways to do basic research, such as cancer research, in ways that immediately engage and impact the community. They also find ways to ensure that programs and interventions, like drug checking, introduced by researchers are sustained after the project ends. How do we bring more of this culture to Rhode Island?
The CAB game
Community Advisory Boards are a great step. But they have also become a bit sketchy. It’s really easy for a state agency or researcher, consciously or not, to put together an advisory board that reflects its outlook. And that’s when CABs are not just stacked with the researchers’ allies and their friends. Example: Time and time again, community members ask to be paid in cash, not gift cards. But there’s a state agency whose CAB is full of old school recovery folks who reject cash because it might be used to buy drugs. Everyone can point to their CAB and claim, “We have heard from the community that X.” Shouldn’t there be some standards or transparency?
Community Advisory Boards are a great step. But they have also become a bit sketchy. It’s really easy for a state agency or researcher, consciously or not, to put together an advisory board that reflects its outlook. And that’s when CABs are not just stacked with the researchers’ allies and their friends. Example: Time and time again, community members ask to be paid in cash, not gift cards. But there’s a state agency whose CAB is full of old school recovery folks who reject cash because it might be used to buy drugs. Everyone can point to their CAB and claim, “We have heard from the community that X.” Shouldn’t there be some standards or transparency?
After the research
After the research is published, it optimally is used to develop new policy, or modify existing policies. Our consistent tenet is Nothing About Us Without Us. Too often our role is essentially a token invitation to ‘comment’ on already developed policy. Our feedback may or may not be considered. How can we, as participants or subjects in research that is used for policy initiatives, infiltrate the development process? How do we effectively help shape the policies that affect us?
After the research is published, it optimally is used to develop new policy, or modify existing policies. Our consistent tenet is Nothing About Us Without Us. Too often our role is essentially a token invitation to ‘comment’ on already developed policy. Our feedback may or may not be considered. How can we, as participants or subjects in research that is used for policy initiatives, infiltrate the development process? How do we effectively help shape the policies that affect us?
Making it easier for community members to get paid
A demand that community members and organizations make over and over again is: pay us for our work! But currently, academic institutions seem to make this process as difficult as possible with hurdles for people getting paid for speaking at classes, working on events, or consulting on student projects. Community members often have to register as "vendors" through complicated processes. It can take months for them to get paid after services have been provided. And all of this is totally inaccessible to folks that don't have bank accounts or fixed addresses. If academic institutions truly want to include the voices of the most marginalized, they need to make paying community members easier and quicker. What’s preventing that and what can be done about it?
A demand that community members and organizations make over and over again is: pay us for our work! But currently, academic institutions seem to make this process as difficult as possible with hurdles for people getting paid for speaking at classes, working on events, or consulting on student projects. Community members often have to register as "vendors" through complicated processes. It can take months for them to get paid after services have been provided. And all of this is totally inaccessible to folks that don't have bank accounts or fixed addresses. If academic institutions truly want to include the voices of the most marginalized, they need to make paying community members easier and quicker. What’s preventing that and what can be done about it?