Thread by @nabarund

== 8 tips for bringing people with lived experience into health research ==
Applies equally to patients with chronic pain and people who use drugs.
Thread below from my presentation today at #NCOpioidSummit @OpioidSummit
OpioidPreventionSummit.org with @nc_usu

@OpioidSummit @nc_usu Here's our shared big goals: Generate the best information and reduce drug related harm.

@OpioidSummit @nc_usu Upfront: What does it mean to represent a community? Do you need active PWUD or people in recovery? Stimulant or downers? Acute pain or chronic pain or cancer pain? Which types of functional interference? Don't ask one person to rep everybody, just because you made that bucket.

@OpioidSummit @nc_usu 1. START WITH HUMILITY. Leave your assumptions and ego at the door. Keeping an open mind will help you uncover research questions you would not have thought of. You don't have to pretend to fit in.

@OpioidSummit @nc_usu 2. TREAT PEOPLE WITH LIVED EXPERIENCE LIKE PHYSICIAN-RESEARCHERS. We are used to making accommodations for clinic schedules, because direct service has urgency. Community partners are the same. Use this existing paradigm to benchmark your own behavior and expecations.

@OpioidSummit @nc_usu 3a. PAY FOR THEIR TIME. They are experts and deserve compensation. Write it into grant proposals as site fees. Make it happen. Bring food, bake cookies, show love.

@OpioidSummit @nc_usu 3b. Engage and do small pilot projects to establish trust early. Truth: Proposal deadlines are not wholly compatible with open-minded compassion and getting to know people. Give them time to reply to drafts, even it means writing those sections first.

@OpioidSummit @nc_usu 4. LEVERAGE YOUR INSTITUTIONAL WEIGHT. Can patients/partners benefit from an email account, library access, or software? If you acknowledge your privilege, you can find ways to share the wealth.

@OpioidSummit @nc_usu 5. WRITE AN ETHICS STATEMENT ON INCLUSION OF PEOPLE WITH LIVED EXPERIENCE IN JOURNAL ARTICLES. If none were engaged in the study, then a brief explanation of why their exclusion does not bias the findings could be provided. Self-reflection brings empathy.

ncbi.nlm.nih.gov/pmc/articles/P…

@OpioidSummit @nc_usu 6. DISCUSS AUTHORSHIP REQUIREMENTS FROM THE OUTSET. If ICJME standard is data collection is insufficient for authorship, then give partners opportunity to meaningfully contribute along the way. "I need a paragraph that says _____ from your perspective" works great.

@OpioidSummit @nc_usu 7. REDUCE PAPERWORK. Institutions require lots of signatures for formal, paid engagement. Work with your budget, billing, COI, compliance & other offices to create a consolidated binder. Give them a heads up about next emails. Single point of administrative contact is critical.

@OpioidSummit @nc_usu 8. STAND UP FOR THEM OUTSIDE OF THE STUDY. If their programs are under attack, if bad laws threaten, if NIMBY raises its head, if they can't find the doctor they need, if your colleagues display stigma: You need to speak out.

@OpioidSummit @nc_usu There will be an added level of chaos. Lives of patients and PWUD can be chaotic and unpredictable. Research is not their 1st priority. Figuring out which party can best reduce the chaos helps.

@OpioidSummit @nc_usu @WeezieBeale said it best: "Love is a research value." We cannot let the extractive capacity of the research machine make info a one-way street. Genuine compassion is the solution.

@OpioidSummit @nc_usu @WeezieBeale If you didn't get paid to, would you read academic writing? Mostly not (COVID is exception?). Translating dry academic prose into engaging comics and stories is an art. Master it by making mistakes and listening to feedback.
Here's how we do it: StrengthandNumbers.org

@OpioidSummit @nc_usu @WeezieBeale Liz Joniak-Grant also reminds us that the relationships need not be long-term. We can come together to answer a specific question, and then go on our way. That's okay. Get started, follow the chemistry. Tho, long-term collabs are wonderful & rewarding as @fwbrason2 can tell you

@OpioidSummit @nc_usu @WeezieBeale @fwbrason2 Thanks for reading. Thanks for being a voice for patients and PWUD. We're in this together.
More on our collaborative philosophy here: opioiddata.org
THEORY. PRACTICE. LIVED EXPERIENCE. That's how we break it down
Credit to @mary_figgatt for helping me grow in this work.

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