Good afternoon everyone Welcome to our uh webinar today creating a new model for advancing data Justice I am Keon Gilbert fellow at the Brookings institution in governance studies also associate professor at St Louis University’s college for Public Health and Social Justice I am joined by Gabriel Sanchez senior fellow at the
Brookings Institution in governance studies and professor of political science at the University of New Mexico together we have co-led this work with Camille busette senior fellow interim vice president of governance studies and director of the race prosperity and inclusion initiative this work has been funded and supported by the Robert Wood Johnson
Foundation and today we’ll talk a little bit about our work this project and really sort of just trying to understand the premise um that is guided got it our work before I forget if you have questions throughout this webinar please send your questions to events brookings.edu on X using the handle
Brookings goov with the hashtag Community data Justice please send your questions there and with that I’ll begin with a brief intro of our project and then I will turn it over to Gabriel Sanchez to um um talk a little bit to start asking questions of our panel and
We’ll go from there our work begins with a premise that vulnerable populations have lacked full access to opportunities that really allow them to lead in research projects many of these projects have included communities in very cursory ways demonstrating models and perspectives that have tokenized their experiences expertise and representation many racialized
Communities especially lower resource communities want to lead research about them to generate evidence that really highlights the challenges and assets of their daily experiences this evidence can insist can assist in the development of policies and programs that really traditional research designs and models don’t currently nor historically have
Supported these communities have made it very clear that there has to be new models and a different research ecosystem that enables Community leadership and engagement we cannot truly continue to only Empower and support large research institutions to guide and control strategies for data governance to get us closer to identifying new strategies and
Models for community-led data governance we structured our work to answer what are the conditions under which communities can be in Greater control of research and data governance more generally so that they can advance their own Public public policy or programmatic agendas with that I want to brief briefly introduce our panelists who will
Help us explore some of these questions and talk about their individual work as a way of understanding how we can develop a new model for data governance to advance data Justice we have with us Kareem Watson Chief engagement officer of the all of us research program at the
National Institutes of Health we also are joined by Stephanie ship professor of the bio complexity Institute at the University of Virginia and we also have adri joh Pedroza national executive director of abriendo Puerta um opening doors with that I will turn it over to gab sanche thank you Dr Gilbert appreciate
The overview that you provided of our work and I’m really looking forward to having a great conversation with our panelists about the Lessons Learned um I will say at the onset before we jump into the questions uh that each of our speakers has been along with us uh
Through this journey uh participated in a number of joint discussions with other experts uh focused on data governance and oversight and many of these folks have also participated in one-on-one interviews uh so their wealth of knowledge has contributed to the research that we’ve done to this point
That Dr Gilbert noted and part of this is is essentially summarizing their experiences along this journey with us U so without further Ado I’m going to jump right into this and just remind audience members as we’re going through the panel discussion um if you’d like to send the
Panel any direct questions remember you can do that at brings. goov if you want to use X or you can send an email to events brookings.edu if you have any questions I will fill those on behalf of the panel and try to get as many of
Those um in towards the tail end of our discussion as humanly possible uh so without further Ado um let’s get things kicked off um our first question probably will give you a little bit of an opportunity to share your overall thoughts before we get into more
Specific questions um as you all know um our research for this project suggest that there has been pretty significant investments in community engaged research uh that provides more power to communities specifically in the area of data governance and data Justice uh for our first question uh please based on
Your perceptions um as researchers in this space as leaders in this space give us an idea of where we are with data Justice across the country as you see it what have been some of the biggest advancements made and where do you see that there’s more work for us to do
We’ll go ahead and start with with you Stephanie thank you Gabe um so where are we well when we started our social and decision analytics division or lab um we were located in Arlington Virginia and we were purposely placed there even though our Institute is located in Charlottesville the reason for that was
That the bio complexity Institute wanted us to work with local state and federal government officials to bring data science to Virginia and Across the Nation where were we we thought that when we started in 2013 that we would be working with mega cities and then we stepped outside our front door and the
Reason I took so long to say where we were located in Arlington and we met with the fire chief and the Chief Information officer and the housing director we realized there was a huge need for what we would at the time called big data now we call it data
Science and data Justice and governance a huge need in these smaller and midsize counties and then as our work expanded and we had a three-state pilot to focus on economic Mobility uh the three states were Virginia Iowa and Oregon we worked with dozens of these smaller towns the
Smaller cities and rural areas and they are all equally hungry as are the large cities large cities adopted data science right from the beginning you know they have their data analytics groups now you see some midsize counties beginning to do that but there are still just so many
Areas across the country that are hungry for this but don’t have the resources or the wherewithal and so uh funding through grants through foundations is really critical we have a Community Learning through datadriven Discovery process and what we like to think is unique about it although I think that it
Is true of many community-based approaches is that we work hand inand with the community they ask the questions and they participate in the research our entry point is often the local civil servants and then we do further outre through the community Through Community conversations but those are targeted toward what issues
We’re focused on so that we ensure that we get that feedback this process works and we have a lot of examples to show that it works thank you that’s wonderful I think you already can tell why we’ve got the right people in the room to have this conversation thank you Steph
How about Mr Watson why don’t we move to you next same question where are we at what what’s going well and where do we see holes that need to be addressed thank you for that Gabriel um well where we are particularly with our program we’re with the we’re the all of us
Research program we are the one of the largest and most diverse genomic data sets in the country when we think about large data and big data we now have over 5 over 700,000 participants who began their Journey with us and over 500,000 participants who data we can actually
Analyze to really begin to interrogate some health disparities but when you and when you think about that data size and what it took for us and also 80% of our participants are what we call underrepresented biomedical research that means from groups who have been historically underrepresented sexual J minorities racial and ethnic minoritized
Populations people living in rural communities even those with lower SCS so it was important for us to create a data governance model that really democratized not just us collecting data from diverse groups but to create opportunities for those who we’ve collected the data from to actually have
A say so and how that data would be utilized so we have we have a data governance model that we developed in conjunction with Dr Consuelo Wilkins at vanderbelt University where we actually have participants in governance and we’ve talked about how we place our participants on our ancillary studies
Boards where they’re actually reviewing what studies will come out from our data they’re actually sitting on our irbs they’re actually sitting in our survey development places so participants are actually sitting in places that can help determine how their data will be utilized but another place of data
Governance we talk about that we don’t talk enough about is in terms of who’s the researchers analyzing the data we know that there is Stark inequities across our historically black colleges and Universities at our Hispanic serving institutions and at other minority serving institutions when it comes to resources and how they have bit
Computing the use of AI the use of machine learning to analyze that data so we’ve partnered with organizations like Community campus part parip for health ccph and even RTI Research Triangle Institute to do some Upstream capacity building to build capacity for our HBCU faculty even things like buying out
Their teaching time because we know that if you’re not a research one institution that your major job may be teaching and so we’ve thought about all those things we think about data Justice even to work with things Partners like the nxg and the last thing I’ll say Gabriel and the
Where I’ve seen some movement in this place is across the the other government agencies like the common fund we now have Awards going directly to community that’s a game changer not Awards going to Big academic medical institutions but Awards going directly to community things that we saw for years in places
Like porori the patient center outcome research institute so we are seeing a change in a participants in governance participants having a say so and how their data is used we’re seeing be a change in who’s analyzing that data and even see see a change and where that
Those resources are being given to but we still have a lot more work to go no I greatly appreciate that especially having some very concrete examples of how we can formalize the role of community in the research Enterprise um and one thing I’ll hit on because it was something that we heard consistently
Across a wide range of interviews for the project descriptive representation came up again and again at all aspects of the the data oversight and management Enterprise and in short we we heard from folks that it’s great to see a greater number of researchers that are embracing these principles uh but it’s not so
Great that we don’t see a lot of folks that are from these communities um leading the effort and I’ll say that’s not just in terms of researchers but we heard whether it’s the translation side of it and working with Media Partners whether it’s working with folks that
Make sure that the data gets in the hands of policy makers we heard over and over again that the work left to be done is identifying and uplifting folks that actually come from these diverse communities in every step of the process so so I appreciate that comment um last
Definitely not least on this question Mr pedrasa uh yes thank you Gabe a lot of great points have been made by my fellow panelist um uh a the P opening doors uh works in the early childhood space around parent and caregiver uh leadership and and we get to work in 42
States with with implementing partners that are on the ground uh really serving communities and families um what we’re seeing is there’s there’s a a strong concered effort across the country to center community and family voices analysis and research um we really see this as a form of of building
Power and data Justice because we’re able to hear directly from those communities that are impacted by the data and the research that we’re reporting um we’ve also seen more Partnerships between research institutions and community- based organization uh as there seems to be more interest and applied research initiatives that really inform research
To action and that’s a big area of interest for for many of the groups we work with is to ensure that the research their participating in uh the data Justice work is is actually leading to uh everyday changes right in their communities uh that they’re able to see
Um we know that uh we’re seeing that technology is allowing for more ongoing right surveying and participation from wider audiences uh and uh in that that is making it more reflective of of community needs um however I think there’s more work to do around uh ensuring that that the data uh
Collection the research um is not is not uh done in a in a passway that we are really truly investing in community uh leadership that we’re seeing uh uh communities and families as co-researchers as has been said by some of the panelists um and there’s there’s
Really work to do around uh really uh seeing uh community members as Co researchers and investing in their training development um and the processes right it’s resource intensive I’ve been a part of many of these uh efforts and uh and and they’re they’re beautiful when they happen right there’s
A lot of capacity that’s built there’s longevity right uh in the ongoing work uh that follows the research uh but it is resource intensive and and it really takes a strong partnership uh between our research institution our community- based organizations um and you know to have good Brokers right in place that
Are that are navigating IRB processes to ensure that that burden isn’t put on community based organizations uh and and and the families that are participating one more thing on on more work that needs to be done um is is really uh taking assets and strength based
Approach to our data and our research so uh there’s so much that we have to learn around what’s working well within our communities uh many times I think we we look at the challenges and the negatives that should be highlighted that we should address and face those brutal
Realities however uh we are seeing families Thrive despite systemic and institutional barriers that they face and we need to uh do more work around highlighting those assets and what working in our communities thank you AR I’m very well stated I I’ll add a couple of points of
Emphasis on on points that were raised um one is we collectively heard from researchers that to do this type of work well and give communities more oversight and power it takes longer than more traditional research right so as adreon noted it’s often labor intensive um I recall uh Stephanie yourself telling me
That part of the process of getting to know the Community Partners just takes time before you even start talking about the research and so one of the the big principal points that we’ve made um in this research project is working more closely with funders to make sure that
They understand the timeline needed to do this type of work and to do it well often takes longer than the typical start and end dates of most Grant funded projects so I think that’s an important point of more work to be done in that space to allow all of us to do the
Important work that often takes a little bit more time than traditional research and then second it’s a basic point that a on made but I think it’s an important one to elevate often times and I know as a researcher in this space I’ve been part of this many many times that I I
Care more than than to admit you do some great research involves a large you know base of the community and then those findings never actually make them way back to the actual community members that participated in the effort so a very obvious but important point to make
For all of us engaged in this research is making sure at the end of the day we report out the lessons learned and the the findings to the participants from the community that invested their time and energy in the process uh Keon I know you you had something that you wanted to
Add to this uh point of the conversation before I transition to the next question yeah so I actually wanted wanted to ask the the panelists to just talk a little bit about um what it’s like what strategies they’ve used um engaging multiple stakeholders um especially across different um Geographic
Boundaries also even thinking about partners and stakeholders that are in different sectors uh we’ve got a lot of people who are likely listening or will listen to this who are at a very early stage of thinking about um this type of work and you know picking up from gab’s
Comment about sustainability it can be difficult in lots of ways it can be difficult in managing the Partnerships and relationships and also difficult in sort of managing that those timelines to getting to um sort of either thinking about processes or thinking about different types of outcomes so if we
Could talk a little bit about managing different stakeholders and Partnerships and across sectors and different kinds of boundaries uh I’ll start with Karine thank you Dr Gilbert um well that is such a great question I’m actually going to speak from my years in in the academy spending 17 years at at the
University of Illinois Chicago and like Dr Gilbert we met because we both did community based participatory research it took me five years to build a partnership with one of my community based organizations project Brotherhood that was on the south side of Chicago working with African-American men and even when you talk about that
Multi-stakeholder multi-p partnership engagement Dr Gilbert one of the things that we did we had to understand that we had to do a lot of pre-work ahead of time so that there could be equity in that relationship even the way that community-based organizations get a sub awward or get awarded through an
Academic partner we had to address a lot of those inequities there was inequities in indirects we even had to have a conversation about what directs meant to a community based organization versus what indirects meant to us as an academic partner and even in in that language and then we worked with Barbers
As well so as academics our days are often 8:00 am to 5:00 P p.m so we hope right when we think about Barbers when that’s time when when they’re working and it’s often the weekends and often Mondays that they had off so it was what we learned is that we had to address
Those inequities Upstream work with The Barbers to say when is the best time for us to engage you how we get you a vendor ID so you can get paid appropriately and on time even teaching those Barbers about thinking about forming things like 501c3 so they could come together and
Become their own Community Based organizations and then just looking at the inequity in in the type of research that I did as a cbpr faculty it may take me almost three to four years to publish a paper based on doing that work with the community partner whereas my other
Colleagues that were in basic Sciences could publish their papers within months after collecting their data so it was just those little inequities in multiple Partnerships and even understanding that communities don’t work that 9 to5 that we do and they often do this on top of
That and the last thing I’ll say Dr G we even had to realize that we needed to compensate Our Community Partners as a different type of stakeholder even for attending the meetings as a faculty in the planning meetings when I attended those meetings that was a part of my job
So I was getting compensated for that but every time we ask one of our Community Partners and Community stakeholder to attend a meeting what seemed to be the right thing to do to co-create and c-plan with them if you’re doing these meetings before the grant before funds are there they’re doing
This on their own time and on their own dime so just what we determined was thinking consciously about the systemic inequities and how they will show up not they might show up but how they will show up on the hands particularly of Community Partners and how to put things
In place within our system to try to mitigate those inequities great thank you uh adri or Stephanie would you like to add before we move on yeah I’ll just add a great points made uh you know I’ll just add and and Gabe alluded to this that that the funders whoever’s funding Right This
Research project is in it for the long haul it’s in it to completion right um because it’s been as as been stated uh you know there there will be challenges right the process will take uh you know many times longer there’s trust to be built as was said by Stephanie um and so
Need needing to make sure that the fun understands that up front um and then also that that we understand what the end game is what the goal is for this and that that’s really co-created with Community right I’ve worked on uh on projects where where we were working
With graduate students uh that uh the project turned into their dissertation the community members knew that that there that this was going to be part of the the end goal uh but the community members also wanted to own part of the the IP right that came out of it um and
So they uh they owned actually part of the social emotional career curriculum that was developed with their support and they were actually able to implement it and use it with community members afterwards so um that was agreed upon at the beginning right agreements were made at the beginning and so that way there
Was no question as they were they were going through this research project of of what the end product was going to be and how life was going to be uh brought to This research project um after the process great thank you okay I’ll add a little do you have anything on this this
Question I do and we work at the county level so maybe it’s a little bit different and once the county has sort of accepted that we’re working with them the data sharing Agreements are usually very easy to put in place in Arlington they did a countywide data sharing agreement Fairfax actually doesn’t
Require any in other counties they have moved rapidly because they’re able to or they have this strong desire to work with us and sometimes speed is of the essence even though upfront it takes a long time to uh create those relationships but what we find works
Best is to have a community champion so for us it’s often the data wide County uh data ordinator or it’s the chief data scientist or whatever the title is of the person in that county because they’re the ones who also have the trust and they can make introductions or
Connections and help us Forge those Partnerships so that once we do start a project we can hit that you know start with sort of hit the ground running so to speak um what’s helped us is also having infrastructure in place so that is we begin to accumulate data it goes
Into what we call a data Commons a lot of our reports and our results and the actual raw data go in there so the county can begin to explore those data as well and then um somebody said that well we have to remember to give that
Report at the end but our model is that we interact at every stage of the way so we meet weekly or bi-weekly or sometimes a little more infrequently monthly but we’re producing results but we’re not waiting till the end to put them in a report to get feedback they’re seeing
Those results and often times our report will end up being a slide deck just because that’s more useful to them that’s been annotated um and we get stuck sometimes on the results we don’t understand perhaps why 911 calls have gone down when the population’s increased well the population that’s
Increased is all young so the community quickly can look at data and have aha moments when they see results that either confirm what they know or provide new ins sites um so I think going back just a close for us it’s having a community champion that helps sort of
Pave the way so to speak and that’s where a lot of our relationship building starts excellent great great conversation already uh to be had so I’m going to transition this to the next question um and often I think as we’ve gone about this research many of you
Experts on our panel would always start with so what’s the end goal here what what are you folks looking to see as the Next Generation if you think about it that way and kind of this data Justice Enterprise and I think we’ve always thought about it in terms of pushing in
The relationships between researchers funders other power Brokers and Community to have that balance of power if you think about it this way 50% or greater with communities um unfortunately neither our landscape analysis or interviews with experts could identify any example of a relationship where the community actually had the balance of power 50
Plus per. um so with our next question I want to ask you folks to think deeply about this do you think it’s feasible or possible to reach a goal of having communities truly hold the balance of power and data governance relationships and if so what do you think has to
Happen for us to collectively reach that goal of 50% or greater power with communities adreon we we left you batting cleanup last time so how about we start with you with this question then we’ll move to Stephanie and then Kar yeah that’s a great question and and
And a difficult question to answer right I think there there are a lot of uh important pieces to this at um both the institutional you know research side of things as well as the community side of things um I’ll say from from our perspective what what we often U you
Know hear from Community groups that we work with in the families is that you know we we really need to uh to listen deeply to what families and communities uh how they want to participate right how they want to own uh the process and then the results right the next steps
You know the solutions that maybe follow um and and and that’s kind of a broad statement but but just to hone in a little bit more you know I I’ve worked on projects where uh where ownership uh looked like parents and community members wanting to serve on advisory
Right boards once the data research was collected to help kind of shape right the project as it move forward into the the maybe action phase um I’ve worked on on on Community Based paror research projects where where community members actually formed a Cooperative right um where they they owned some of the
Relationships that were developed right through that research project we actually able to uh create you know uh contract work and part-time jobs uh for immigrant family members who uh to advise institutions on other data research projects and to be a part of other uh uh you know uh research uh
Projects as as as uh you know co- researchers um and and develop curriculum and different things so they they created an entity and then and then you know owned kind of that so I think is really allowing right these different levels of participation of ownership you know uh family members community members
Are you know many times busy with their full-time jobs you know they’re doing this in the evenings or on weekends um you know some of them might be able to to take time during the day but to really allow a flexible process for community members to Define what that
Ownership looks like um and uh both during the process as well as the followup um and the next the The Action items that follow I’ll pause there excellent thank you adrean uh Stephanie any any insights on you know reaching this 50% or greater power with communities need to unmute yourself Dr
Sh sorry about that I who do have a note here um I like to think about it being more meeting the county where they are and so early on they often don’t have that experience but as I said if we have a community champion and then we have a
Community team even if that team is small it can be powerful and and that balance can sort of EB and flow but we don’t do any of the work without them I mean they work with us to create what questions we’re answering through the data we share those results all the way
Along and they help provide insights and then at the end those conclusion I and policy analysis but we have two examples where um this really worked well in fact in both examples these counties came to us because they had concerns or a data issue that they wanted to address so
They were super motivated the first one was in Patrick County Virginia and the local public health official was um brought together she came to us and she said we lost our last hospital we’re really concerned about health care access for our population in P Patrick County which is rural but not very
Densely populated and she put together a team with her local Cooperative Extension which is something that we propose a lot of these teams have as well as the local Fire EMS person and the first thing they just wanted was a dashboard they wanted to understand the
Data and we created lots of maps and put together lots of data but what emerged out of that was that we found that almost 34s of the population live within a 12-minute drop of a Fire EMS station so once they understood like access to services such as doctor’s offices or
Clinics or even grocery stores or other services and the fact that they most of the population lives so close to Fire EMS stations they immediately set out to secure funding to set up teleah Health visits with doctors and specialists at these Fire EMS stations so that was
Amazing within sort of this 10 or 12 week project that we had with them they actually achieved an outcome uh a similar thing happened in Marshall toown Iowa I’ll be briefer but same thing they brought together their transportation specialist Cooperative Extension and the community to find out why the bus routes
Weren’t working and through a lot of data analysis they improved their bus routes and achieved an over 10% greater increase in ridership and won several federal state and awards so those are two examples that were very successful because the community really was involved and actually took based on the
Data results that we presented to them but with for our model they have to work with us it otherwise it doesn’t work um they have to be invested in it but achieving that of course is what takes time and relationship building excellent thank you for that
Just putting a a sharp tooth on the point of meet communities where they’re at and great outcomes happen right I think that’s the take-home message from what you’re hearing across the board Kareem any any insights on this particular question helping Ensure we get to 50% or more Empower relationships
With Community Partners and what do we need to do to get there thank you gabri and I’m going to build on build on what Stephanie said in meeting communities where they at but I’m going to speak on the side of at how even the funding announcements are written we have to do
More work to ensure that the funding announcements are written in a way that allow for that to happen and again I highlighted these two before but there are when we see when the funding announcement highlights and elevates and said we want to see community in the
Driving seat we want to see 50% of the budget or more goto Community when that happens in the RFA academics many of us that do community based engage work we want that and we can then take that to our institutions and say this budget must be co-developed where half of this
Goes to the community partner again to reiterate what I said before we saw that in the common fund where there was a particular grant that came out of the NIH called the common fund where the the primary applicant had to be a community based organization not an academic
Partner that was a game changer we see that in the Eugene Washington porori engagement Awards where you have to have a Community member and you have to walk through how the budget will be equitably given to those community members but Gabriel there’s an upstream thing that
Needs to happen that we have to do an asset and needs assessment of Our Community Partners to see will they be able to be an equitable player do they have the budgetary resource within their organization to handle a grant of its size some rfas require that you have an
Operating budget of a minimum amount that community-based organizations don’t have so how can we partner them with a Fiscal Agent that’s also another community- based organization that can be their partner Community office and technical assistance we hold technical assistance several times way leading up to Grants rfas that we what OTA
Applications that we put out because we want to make sure that community members have time to ask us what should they be thinking about in putting this grant together so that that Community member can truly be in the driving seat and so those are some of the things and I I’ll
End with another concrete example there was a researcher in the Detroit area out of Wayne State University Dr Haley Thomas Thompson who actually had a porori engagement Grant but empowered put things in place so that that community at the end of that Grant they applied to become a not for-profit
Organization so the work that she started doing in that Cory engagement Grant could continue after the life cycle of that Grant was over there’s some examples out there but we need more excellent excellent discussion um I’ll highlight a couple of points that you made Mr Watson that came across the
Overall landscape work that we did and we just heard over and over again from experts in the field and one of those is that funders have an awful lot of power uh to move communities in this power relationship above the 50% threshold and you noted that how the RFA or the RFP is
Structured right pushes us as researchers sometimes to to pursue Community having more power because at the end of the day we want that as you noted and we know that it’s going to increase our likelihood of getting funding to do this great work but the
Key is and this was emphasized in in a lot of the interviews that we had in order for communities to actually take ownership of that power and something as basic as being the home to the Grant and having oversight of all budgetary decisions we cannot assume that they
Have the capacity inhouse to tackle that and so making sure that in the context of thinking about funding we also invest in the infrastructure of community-based organizations and nonprofits so they have the capacity uh to oversee those grants including the evaluation which is often part of the RFA so that
Infrastructure needs to be built in order for communities to actually own that power that I think we all want to collectively move them uh towards um so with that I’m going to pause just to remind everybody in the audience I’m seeing audience questions starting to stream my way we appreciate that uh for
Those of you that have questions remember you’ve got two opportunities to send those in you can either email us at events brookings.edu or for social media users you can use x formally Twitter Brookings goov and please use the hashtag Community dat Justice there’s still time to get those questions in
We’ve got one more panel question um and then we’re going to transition to the questions from you folks at the audience so send those in again to us to make sure that we can get to them so with a final question that I have for you
Before we open things up to the audience um so far we’ve had a wonderful conversation that’s somewhat assumed that by providing more power to communities over decisions regarding how data is collected how it’s analyzed for what purposes um it will be utilized to advance policy Etc we’ve somewhat
Assumed that by going down this path we’ll actually see less inequalities facing communities across a range of social policy issues right I never like to make assumptions so I want to make sure that before we transition to audience questions I want to pose this to you directly do you believe at the
End of the day that by empowering communities to take more control over data and research will we actually move needles in terms of inequalities and you can think about those inequalities from a range of different perspectives whether that be race ethnicity gender socioeconomic status I know all of you
Work in different spheres so feel free to take this question in the direction that you would like to uh Kareem I believe we’ll start with you then we’ll move to adrean and then Stefan thank you Gabriel I want to actually frame this as a an conversation I think there’s definite need to move
Data democracy in the with Community being an equitable partner but I do think that there is benefit in community academic Partnerships especially when it comes to intervention development so I remember when I was working on my dissertation looking at a community health worker model for cervical cancer
Screening in a global setting it was a community health worker that told me Kareem your intervention will not work unless you ground some of the education of what you’re doing with the staff in a faith-based context you’re missing a whole Community element of a faith-based approach so it was me listening to that
Community Health worker imp implementing what she said into the work that we were doing that led to to some intervention so as a researcher and as an academic we deal hopefully we deal with interventions so I think it’s a and Gabriel I think it’s making it an equitable partnership I don’t see right
Now that the part of the moving the health disparity needle will only sit on side of the community or will only sit on side of the academics or even our government or other community based organizations I think it has to sit at that intersectionality of Team science
That’s where I think we’ve been too inequitable is that one side of the power structure usually sits on the side of the Ivory Tower researcher and therefore Community is usually an afterthought or just an advising board member and truly not driving that work and I know firsthand that when I was
Doing work on prostate cancer screen on the south side of Chicago we were able to move the needle in that Health disparities by working directly with the community based organizations by working directly with the Barbers and the fraternity leaders in that community that allowed us to recruit the
Population that we needed the data that could be analyzed actually showed that had we relied on previously scientific data that was collected where the majority of those participants were not African-Americans or not Hispanic or Latino men that carry the greatest burden disease we would miss a certain percentage of dangerous prostate cancers
That work was done and was powerful and moved the needle because it was done with communities for communities with academic Partners in an equitable way so I think it’s a and we get to excellent well stated always have to have that and right so we’re not limiting right any of our our Collective
Goals at this point where we’re really brainstorming what we would like the future to look like right I think we should be as as Broad and ambitious as possible excellent adrean yeah you know I I agree that that really when we uh ensure that that the
Work is done at the intersection of of Institutions uh Community you know power Brokers policy makers that uh we will really see things shift in equities and in the end you know in in our my point of view um families and Community really need to see their daily lives impacted
By the projects that they’re involved with right that it’s motivating for them to want to be engaged in something that that they’re going to see impact right and improve their daily lives and I’ll give you an example of this um so in New Mexico there was a big effort uh 15
Years ago to really improve our early childhood system right uh unfortunately New Mexico many times is the last place in child wellbeing and many indicators um so funders were interested in in learning why maybe families weren’t accessing uh child care in their communities so we uh uh engaged in a
Community based particip research Pro uh project with uh uh the University of New Mexico um community members as co-researchers and and community members went out and interviewed family members parents around why they weren’t accessing uh Child Care the Assumption was that they didn’t you know that they
Didn’t want uh that they couldn’t access a child care center because of of maybe cost or or or trust um and and some of those things were true but what what the community co-researchers found out is that they were they actually were using child care but they using homebased
Friends and Families neighbors Child Care um and so this spurred an additional question while you know why are our Homebase providers off of our radar as an early childhood assistant and so there was a some follow-up research that was done to better understand uh the homebased provider
Sector and why they weren’t a part of our formal Early Childhood system um community members were a big part of of not only designing uh This research question collecting the data doing the interviews but also that led to a lot of work that followed to shape an early childhood
System in New Mexico um that really funded provided support technical support um that credentialed and and and helped our homebased provider and our friends families and and neighbors providers to be a part of the Early Childhood system um fundamentally really changing the way right that that uh homebased childcare providers uh were
Able to participate and to be even be compensated right uh by by our state subsidy uh uh program uh and so uh that’s an example of of how when we saw this intersection happen right policy makers being at the table institutional leaders uh community members informing the process being involved in the
Process that we saw things shift that we saw really uh uh things change um at the community level at the systemic level that really allowed a better more informed Early Childhood system and and led to a bunch of other victories in the early childhood sector in New Mexico excellent example adrean I was
Blessed to be part of that effort Once Upon a Time I’m here in my home state of New Mexico and I will point to because this question basically asked right are outcomes going to improve if if we you know expand Community capacity and ownership and we have highlighted here
At Brookings uh the work you have done collectively with a lot of other Community Partners uh to have New Mexico be one of if not the leader in early childhood funding and building out the infrastructure to service families in the state of New Mexico that’s an excellent example uh Stephanie um La
Last on this particular question and again uh for folks in the audience right we don’t want to make an assumption that outcomes and inequalities will actually improve um with improvements in community oversight and data power uh Stephanie any any thoughts on this one still still got to unmute yourself I
Do and I was doing it in the wrong place sorry about that um just I think Kareem and audrian already eloquently said this but part of working with a community is the learning and the education and the capacity building that occurs over that life cycle of the democratization of
Data so communities at first when you work with them they don’t even realize they can ask these questions because they’re so used to getting prepared reports and that’s all the data they have and then all of a sudden they have the wealth of data in front of them that
Answers questions that they have so I think learning to ask questions and not just accepting the status quo that’s sort of early in that learning cycle and then building their capacity to actually use these findings in a way that informs their policymaking and their decision-making um we liked when we work
With the firefighter he would talk about well that helped me improve my situational awareness that helped me improve my strategic planning and that helped me improve my anticipatory or unintended uh events that might have happened and so sometimes even thinking about how you structure what is the kind
Of question that’s being asked and how will this help help the community at large we also have been working with Fairfax County and um they asked us to do a study on the status of women and girls in Fairfax County and out of that with our through our community
Conversations and data analysis we also discovered that child care was really the Lynch pin to a lot of the issues and challenges and problems but it’s a two-sided coin because the child care providers also are not very well paid so you have problem you have a problem on
Both sides and uh working not only with the women the community conversations with women in the community as well as with the local government officials those that were passionate about working on this the the proposal to the Board of Supervisors is to consider making Child Care on both sides part of the education
System so you begin to professionalize it but then you have to balance that by providing subsidies to families to be able to afford the child care as well and we we had several recommendations that were gained both through conversations with the community but they this became a unifying topic that
Really led to what is how could you improve the status of women and girls in Fairfax County it seemed Child Care elder care and professionalizing those um occupations as well as enhancing uh benefits to families to have that became sort of an issue that everybody could
Rally around um I will have to add that longer term funding for this kind of Community Based research is also important we receive a lot of funding to do prototypes or a pilot and then it ends and so I think also a plead of Foundations and grants Grant providers
Is that they have to look at a longer run time scale for this it can be very frustrating to get to this point prove it successful and then it stops oh that’s an ex excellent point to end with because I think all of us as researchers have been there in our
Careers where you’re just starting to see the fruits of the collective labor and then his transition away from funding and and trying to explain to the community why that happened uh so I think making sure if the end game right is addressing inequalities that are Stark and have been built over
Generations we have to remind ourselves we’re not going to solve that in a in a three to five year Grant it’s got to be a long Hall investment that I think you’ve heard from all of our p note um so this is a beautiful thing you all
Have actually been concise and and and really on point with your answers which leaves us right on schedule to get to the audience Q&A as we’d hop for so I appreciate all of you not only for embarking on your wisdom and sharing that with us uh but doing so in in a a
Succinct enough way to make sure that we have plenty of time for for audience questions um so with that I’ll start things off I appreciate audience for sending in a good number of positive questions that we can turn to um I’ll start with the first one uh Keon please
Feel free to add any follow-ups if you feel that it’s needed as we start this conversation um I think this question’s a great one uh that comes from Caitlyn levenson from Ralph 50 she’s an assistant editor there and it hits on a theme that you’ve already heard collectively across our conversation on
Trust um her question notes that you know considering that there’s historic mistrust and very low low trust levels between the community and academic institutions between communities and government that often funds This research and let’s be honest sometimes between communities and us as individual researchers her question is how does
This style of research and increasing Community power over decisions over data how can this framework help governments move forward with improving and restoring trust with communities and I’ll add Beyond governments if that’s all right with you Caitlyn also funders and researchers in essence how can doing all this work that we’ve laid out
Actually improve trust Dynamics which we know is so important for This research to begin with um any of our panelists um I don’t want to call it anybody in particular if anybody feels like this question speaks to them feel free to unmute yourself and Jump Right
In um it’s said government so I I’ll jump right in first um then I’ll be brief but I I think I want to add one thing to to Caitlyn um comment if I may it said considering the historic mistrust I always like to say Justified mistrust right that mistrust is
Justified and I actually don’t tell my peers let’s try to make the Community Trust us let’s work on letting the Community Trust us we actually work on internally becoming more trustworthy right because that’s the bir directionality on it and so having Community Trust you and We Know It Takes
Years for that to happen we need to appear more trustworthy a concrete example for us and how democratizing data and getting to more Equitable power dynamics between Community happened with our work that we’re doing in the all of us research program and at Tuskegee University in mon County we had to
Address firsthand the historical misgivings that happened through the United States Public Health Service study of untreated syphus in the African-American male the reason why I say the full name of that study and don’t call it the Tuskegee experiment is because when we went down to the community and had a series of listening
Sessions and roundtables they said we don’t like when people call it the tuskeegee experiment because it puts a negative connot on the community and it doesn’t put the onus of where the injustices actually happen when we went down to tuske University to in mon County to have these conversations we
Knew that we could not come in and have one conversation and leave we actually left Resources with three community- based organizations in that county to have the five years of engaging with Partners in making County for building trust for this for them to see us as more trustworthy we finally after
Finding five years community members have said now you’ve shown us that you you are we are ready to have a real conversation with you now we want to talk to you about how you can come into our community under our guidelines and have true and form true Partnerships
That took five years it took us planning resources in that community and lastly it took us having an accountability statement and saying we understand why you don’t always trust government there’s a historical precedence for that excellent any of our other panelists want to jump in on this question regarding
Trust well um I know that early on we met with the Department of Social Services in a county in Southwest Virginia and we thought we were pretty prepared we had talked to several nonprofit organizations and we had talked to many of the people in the community but we hadn’t talked to him
Before the formal meeting and we started our presentation and he took one look at us and he just said oh you’re the researchers who just take my data and I never see you again we’re like we we Tred to say we hope we’re not those researchers and that’s not our model but
We knew that we had lost that fight and because he had had such bad experiences with that so it’s not just lack of trust with the government it can be lack of trust with University researchers and really build so to build that model so we do have and I’ve mentioned this a
Proposal that Cooperative Extension Service professionals be they are the boots on the ground they’re in every County and city across the United States they are a trusted Network because they work with the community and so we’re proposing a data science core within the Cooperative Extension and we’ve
Discussed this idea and even tested it in a three-state pilot and we’ve shown that it works so when we’re talking about how do you scale communitybased participatory research or in our case our community learning through data driven Discovery Model we think that one entree and an important entree is through Cooperative Extension because
They are that trusted Network in the community and so that can initially especially if you don’t know a community they’re your Champion or can be your champion and and so we have proposals that we’ve submitted we’ve socialized it with USDA and on Capitol Hill and with many many other groups including
Corporate extension across the country um so we think at some point there will be um one of the ways to scale this model over excellent I love it great wisdom so far thinking about this really important dimension of trust um adrean anything that hasn’t been covered that you might
Want to chat about on this question nothing else to add very well said excellent I know Keon you’ve uh been looking to get a follow-up question in and I think this fits really nicely with the narrative that we had so go for it yeah so we’ve got a we received a
Number of questions um covering and thinking about capacity in a lot of different ways and you’ve given some examples kareim you’ve talked about the capacity a little bit of um some of the work that you’re doing HBCU some capacity that has been built at um at
NIH to be able to fund community- based organizations directly um adrean you talked a little bit about it from the community side working with families Stephanie also talking about it with working with different government agencies so if we were to sort of Peel back some of the layers of the work that
Has happened to get you to some of these examples that you’ve talked about what have been some important pieces or elements of putting that together in terms of ways that they could support a data Justice infrastructure for either community- based organizations government um we talked a little bit
About funders and even about academic institutions so I’ll leave it up to you to give an example um adrean I’ll start with you yeah you know um I I think a userfriendly process right uh for for community members you know uh user friendly from from the data collection
Side I’ve been involved in IRB processes where we had great Brokers you know within an educational institution that that made it uh a very userfriendly for Community to be IRB approved right uh data collectors and res Searchers and went through a community friendly training um so you know user friendly
For me you know is really right important um I I I would also add that you know as we look at and and and Kareem you know talked a little bit about this about how we’re investing in that infrastructure and Community uh right that that is going to build
Capacity that that is there to stay right and and kareim talked about forming nonprofit entities you know I’ve seen you know as I mentioned cooperatives formed uh business business entities right be formed out of out of that right to for some economic right benefits to community that outlive that
Research project so how we can uh build that capacity right that will live in the community uh beyond that research partner uh process is is is very important um so there’s there’s the the infrastructure in the actual process and then there’s the infrastructure right and that in that capacity in the the
Tools building the skills building uh the structures right that we create in community um and that’s what I love to see I mean you know some of these structures that I’ve been a part of you know seeing um still live you know 10 15 years later and and they’re still
Working uh right U on that issue right in different ways and and with different clients or different partners um but but you know that I think shows that when we invest in in leadership of community right and those infrastructures that that that we will get those results
Right tenfold and Beyond any given funer timeline that they might uh you know that that they might have for that specific project thank you uh I’ll turn to Karim you want to add anything I I think Adrian kid on it for sure it’s that capacity building and again it’s it’s
Creating space for it and Stephanie even talked about this we need to think about that year one of that Grant sometimes being just for a capacity building and maybe that year five of that Grant being about sustainability and dissemination right how do we think about those things intentionally but they cannot be
Afterthoughts that’s what I’ll add to this in this brief period of time excellent Stephanie anything to to add to this conversation I’ll just repeat a little bit of what I had said is having that champion whether it’s the firefighter in Arlington County or the countywide data coordinator in in Fairfax or the
Cooperative Extension in um rural or other areas that you may not know as well I think starting with that trusted champion who can and then introduce you is important as well wonderful as I look up at the clock wow time flies when you’re having fun uh
So we’re coming to the end of this program I’d like to thank our panelists uh for being outstanding throughout the full entire process I know that they’ve been with us for the full ride on this project we appreciate all of your wisdom your thoughts uh thank you to the
Audience for being wonderful those of you that were able to submit questions um I want to point out that our team team um likes to take our own advice we said always when you’re working with communities you want to report back out to what we found um so look to this
Events page it’ll be probably the last day of this month we will have our full report and some other support materials available for all of you uh to check out see what we’ve learned feel free to email any of our team um if you have any follow-up questions after you get to
Take a look at those materials in closing um the last two questions that I took a look at basically allow me to talk a little bit about the next steps this question basically said what resources could be made available to either researchers state governments County governments that would like to
Pursue this path but maybe do not have the tools or the infrastructure you’ve heard that word infrastructure noted often to be able to actually Implement all this great wisdom that we’ve heard uh today from our panelist and I’ll say part of our next steps and this will be
A conversation with our great partner the Robert Wood Johnson foundation and our team about what those Next Step may look like one of the ideas that have bubbled up through the research from the experts that we’ve heard through uh this full process is building out a toolkit that could essentially be utilized for
Both Community entities nonprofit organizations cbos researchers as well as Media Partners and state and local governments to provide them with resources whether it’s examples of rfas that be could be crafted from funders side of things whether it’s on the ground researchers that come from these communities that can be Partners uh for
Local governments to pursue this type of research what we see is hopefully addressing this question by providing some examples and some resources to help all of those folks that say I want to do this but I don’t have the infrastructure let’s try to meet them where they are at
Um so those insights came directly from this process and hopefully we’ll be able to take this to the Next Generation so on behalf of our full research team Dr Gilbert and myself Camille buset who’s leading this effort Carly and and Quadro our full research team at Brookings
Thanks to all of you hopefully this has been a wonderful conversation that leads to some insights to push us beyond the 50% threshold for communities moving forward thank you very much
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