An Exciting Time for the Community Data Justice Collaborative (CDJC)
At last month’s meeting, we discussed the involvement in two initiatives:
1. MADE for Health Justice: Advancing data justice through the creation and deployment of a community-led data assessment survey.
2. Brain and Cognitive Health Campaign for Allegheny County (Brain CHEC-AC): Championing health equity, reducing stigma, and improving outcomes around Alzheimer’s disease and Black and Brown communities.
Here’s a closer look at how these projects are unfolding.
Data Tools for Allegheny County Communities
Data justice means giving our neighborhoods the power to decide what gets counted, how it’s collected, and how it’s used.
To make that a reality, we are developing a community data assessment survey in partnership with the Allegheny County Department of Human Services (DHS). Supported by the de Beaumont Foundation, this is the final stage of our work through the MADE for Health Justice initiative.
The survey will be distributed by CDJC members and Black Equity Coalition’s (BEC) community health workers to community residents in Allegheny County.
The survey will measure community data needs by assessing three key areas:
· Usage: How residents believe their data should be handled
· Knowledge: Assessing current community knowledge surrounding data
· Accessibility: How accessible the data is to community members
This approach ensures that public data serves public needs by centering Black and Brown voices from the start.
Brain Health Equity for Black and Brown Communities
Just as we are closing out a chapter in our fight for data justice, we are opening a new front for health equity: brain health, Alzheimer’s and dementia research, and the Black community.
Currently in its second year of a five-year grant, the Brain CHEC-AC initiative is an interdisciplinary effort with the Alzheimer’s Disease Research Center at the University of Pittsburgh (funded through the National Institute of Neurological Disorders and Stroke).
Working in partnership with the BEC and the Allegheny County Health Department, the project brings together researchers from Pitt’s Schools of Medicine, Nursing, and Public Health.
According to Dr. Dara Mendez, associate professor of epidemiology and associate director of the Center for Health Equity, who helped pull the research team together, this integrated work is intentional.
She emphasizes that the work must be ‘grounded in community experience, lived experience and voice’ so the initiatives can remain sustainable.
Our shared goals for the project:
· Create Counter-Narratives: Confront and dismantle the cultural stigma around dementia in Allegheny County’s Black and Brown communities.
· Encourage Early Detection & Intervention: Identify mild cognitive impairment or memory issues early, connecting community members to advanced clinical care and emerging therapies when they matter most.
· Cultural Safety: Transform clinical spaces so that Black and Brown history, identity, and concerns are treated with dignity and respect.
Bringing Science Back to the Neighborhood
Project research also includes exploration of blood-based biomarker testing, a simple laboratory analysis of blood samples to detect the physiological signs of Alzheimer’s disease by measuring specific proteins.
At our last meeting, Dr. Licelia Williams, Dr. Beth Shaaban, Hector Salazar, and Julie Klinger from the Pitt research team, presented their 1st year findings to the CDJC
Their work emphasized biomarker testing opportunities, aging processes, cultural safety, and practical ways to maintain good brain health.
True to our mission, the team will soon bring these findings directly back to the local communities from which they gathered data last year, ensuring Black and Brown patients are no longer left out of the conversation.
Redefining Health Literacy
We have learned that standard reading levels don’t always equate to personal health literacy.
Researchers are addressing this by using a 5th-grade reading-level baseline alongside a strengths-based approach. This allows medical teams to adapt to a participant’s communication needs in real time, on a case-by-case basis.
Together, we are building tools to ensure medical researchers respect, understand, and successfully reach Black and Brown communities.
Why This Work Matters: The Reality
The disparities Black Americans face when it comes to brain health are distressing. Statistics from the Alzheimer’s Association illustrate why culturally safe, community-led research is imperative:
· Elevated Dementia Risk: Older Black Americans are approximately twice as likely to develop Alzheimer’s disease or other dementias as older White Americans.
· Current Impact: Black Americans aged 70 and older, 21.3% (more than 1 in 5) are currently living with Alzheimer’s.
· Care Access Deficit: Less than half (48%) express confidence that they can access culturally competent dementia care providers in their geographic area.
· Systemic Trust Barriers: Only 53% of Black Americans believe that an eventual cure for Alzheimer’s will be distributed fairly, without regard to a patient’s race, color, or ethnic background.
Rewriting the Narrative of Clinical Trials
These disparities are worsened by a historical lack of representation in clinical medicine.
A recent review published in the Journal of the American Medical Association (JAMA) analyzed 71 published Alzheimer’s clinical trials conducted between 1997 and 2023.
Their findings were stark:
· 49.3% did not report on race or ethnicity at all.
· Reporting was inconsistent and focused predominantly on White patients
· Black patients were only represented in ~28% of the trials.
· Representation was worst for other non-White ethnicities, with Native Americans being represented in less than 3%.
We are working hard to change the narrative by fighting the stigma and championing early detection across Allegheny County.
The CDJC, BEC and our dedicated partners are building a blueprint today that will help researchers expand equitable, safe, and just healthcare to other communities tomorrow.
