Built With, Not For - CWRU
Stories of community and research building together
Case Western Reserve University | Cleveland, Ohio
Every research university in the country knows it needs community partners. Almost all of them ask the same way.
They call late, after the study is designed. They ask for access to people rather than input on the work. They rarely pay for the time. They rarely share credit when the paper comes out. Community organizations have seen this movie enough times to know how it ends, which is why the next call is harder to get answered than the last one.
Case Western Reserve University wanted to try it differently.
The question
CWRU's Clinical and Translational Science Collaborative had a problem it could not solve from inside a university. Black women are underrepresented in clinical research, and the materials meant to change that were being written by people who were not from the community they were written for.
So CWRU's Center for Community Health Integration came to OHC with two questions:
Could a digital platform built for cultural fit actually convene Black women who lead community organizations in Cleveland and keep them connected over time?
And could that same platform be the workshop where health literacy and clinical trial materials get built, with those leaders in the room from the first draft forward?
The setup
OHC did not run an open call. Open calls surface whoever has time, not whoever has trust.
Instead OHC worked its networks and referrals to find 35 Black women-led community organizations across Cleveland, then brought a cohort of their leaders onto OHCEngage. The group was chosen for range: different neighborhoods, different missions, different people served. A toolkit built with five leaders who all run the same kind of organization is a toolkit for one slice of a city.
Then OHC did the thing that changes everything, and equitably compensated them. Fifty dollars an hour, for expertise, like any other consultant on any other project. That single line is the difference between partnership and extraction, and it is the easiest thing an institution can fix.
The work
The leaders came on after an orientation, then went to work in focus groups and co-design workshops run by OHC and CWRU together.
They tested the platform first. Was it usable. Was it reliable. Did it feel like it was built for them or at them. Then they tested whether it could hold a relationship over months instead of staging one good conversation and going quiet. Then they used it to make something.
The sessions were workshops, not interviews. That distinction set the posture in the room. Participants were not being consulted on someone else's draft. They were writing it.
The materials came together the way a campaign does. Audience first, message tested, design deliberate, every round shown back to the women who knew whether it would land. The standard was never whether the researchers liked it. It was whether the leaders said their communities would recognize themselves in it.
The outcome
OHCEngage held up. The women who used it said it worked, said it felt built for them, and told OHC exactly what to fix next.
The project produced a set of health literacy and clinical trial materials that a Cleveland audience would actually read, authored by leaders that audience already trusts. CWRU walked away with a validated engagement platform it could scale to other health equity work instead of rebuilding the relationship from scratch for every new study.
And the findings went back out in three directions at once. To CTSC researchers. To the community, through community meetings and social media. To the wider field, through peer-reviewed publication. The community that produced the work heard about it in the same cycle as the academic audience, not three years later.
The point
Recruit early. Pay equitably for expertise. Build a platform around how people actually work. Share the credit.
Do those four things and the research gets better, the materials get used, and the relationship outlives the grant. Cleveland is where OHC proved it.
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