Thread by @jason_r_DC

The brilliant @KBibbinsDomingo opens today's @theNASEM workshop by reminding us that #EquityInClinicalTrials is about justice, better science, and economic opportunity. There are NO excuses to prop up the status quo, y'all. #BrainHealthEquity

#AdaoraAdimora points out that the research enterprise too often focuses on enrolling individuals that are easy to enroll.
Yes, ma'am...an example of how privilege is exalted by the current system. 🧵/2 #EquityInClinicalTrials

Dr. #AdaoraAdimora underscores the importance of hiring diverse staff that understand, empathize, and reflect the communities to advance #EquityInClinicalTrials. It's past time for research to be anchored by **communities** and not institutions. 🧵/3

Now Dr. #MahasinMujahid underscores 1) the need for geographic diversity in research to contextualize our insights 2) examine who we are funding to do this work (are they from the community?) & 3) consider the #SDOH & structural racism in our science #EquityInClinicalTrials 🧵/4

"Time is a social determinant of health" Dr. #MahasinMujahid makes a brilliant point on the need to rethink how we compensate participants.
Too often our approach / policies overvalue data collection while undervaluing the time of participants #EquityInClinicalTrials 🧵/5

Yes! #AdaoraAdimora raises a critical point: fair compensation of research participants shouldn't be considered coercion "that's patronizing... we wouldn't think twice about compensating physicians for their time." 🧵/6 #EquityInClinicalTrials

"A lack of fair compensation can lead to mistrust" #AdaoraAdimora Excellent point. This entire dialogue around adequate compensation for participant time is so critical & ripe for policy change, y'all. #EquityInClinicalTrials 🧵/7

.@gradydoctor does a powerful job of anchoring the "Beyond Mistrust" panel in the everyday injustices that BIPOC communities face...police brutality, racial profiling, etc. We must look beyond #Tuskegee #EquityInClinicalResearch 🧵/8

Now @gradydoctor is bringing in the lived-experiences and words of the community into this #EquityInClinicalTrials dialogue. #WhatsYourWhy? We need the research enterprise to reflect on this question more across the study design process. 🧵/9

Loving these @AAMCtoday principles of trustworthiness presented by @PM_Alberti "You are not the only experts" Yes! Lived-experience must be better valued across the research design process. #EquityInClinicalTrials 🧵/10

Challenge assumptions to do better in your work: "not all gay people go to the club, not all Black people go to church" @PM_Alberti #EquityInClinicalTrials 🧵/11

Now @GinaGreenHarris highlights how the @WisconsinADRC has structured its staffing to achieve its goal of building #BrainHealthEquity! "Building a framework to support the community is our goal, research is not our first priority." #EquityInClinicalTrials 🧵/12

"What we like to talk about is liberation." @WisconsinADRC #EquityInClinicalTrials 🧵/13

Empowerment is key to the work of the @WisconsinADRC & @GinaGreenHarris. Leveraging an asset based model helps center PEOPLE in research. #EquityInClinicalTrials 🧵/14

"We didn't mention research until 3 years into our work" @GinaGreenHarris highlights the long game that the @WisconsinADRC is taking to do better / more equitable #Alzheimers science #EquityInClinicalTrials 🧵/15

And for all y'all haters out there, @GinaGreenHarris has brought receipts on the effectiveness of the @WisconsinADRC's asset based model for sustainable engagement / recruitment #EquityInClinicalTrials 🧵/16

Now @BiotechSusan kicks off a panel w/ @sinsipuede @rgreersmith #SarahKrug on the importance of patient-centered engagement in research, building on today's themes of valuing PEOPLE across the enterprise. #EquityInClinicalTrials 🧵/17

.@sinsipuede highlights a great new resource from the @NPWF on "Choosing Health Equity:
Understanding Decision Points in Research" to help improve diversity in healthoutcomes research nationalpartnership.org/our-work/resou… #EquityInClinicalTrials 🧵/18

.@sinsipuede of the @NPWF gets to the point: "This is an issue of power" highlighting the larger dynamics at play that prioritize institutions over communities #EquityInClinicalTrials 🧵/19

"It's important to keep in mind what community infrastructure is compared to academic and industry research" @sinsipuede Yes! Sinsi & @rgreersmith remind us that the power dynamic is uneven between stakeholders #EquityInClinicalTrials 🧵/20

And that's a wrap on the second @theNASEM workshop on #EquityInClinicalTrials - critical conversations that will inform action oriented recommendations. Thanks to all those folks that stayed with us!
My key takeaway message from today 👇