On Dec. 3, medical researchers from across the region gathered at the University of Pittsburgh for a conference entitled "Health Across the Lifespan: Allegheny County 2012." The goal of the conference, according to literature, was to discuss the state of the health of Allegheny County residents.
Of particular note was a breakout session to discuss high infant-death rates within the African-American community in the county. The numbers were jarring. In Allegheny County in 2009, there were 16 deaths per 1,000 live births among African Americans, while the rate among whites was 5.5 deaths per 1,000 births. The Allegheny County numbers for African Americans are considerably higher than both the state (14.4 deaths per 1,000) and national rates (11.6 deaths per 1,000 births).
But the most startling fact at this conference wasn't that the numbers are high, it's that they've been that way for a very long time.
"Maybe I've lived in Pittsburgh too long," a middle-aged African-American woman in attendance told the panel. "But I feel like I received this same information back in 1987. Nothing has changed."
Researchers agree that while there has been a lot of research on the subject, there haven't been a lot of solutions. That's something that Dr. Jessica Griffin Burke hopes to change.
Burke, a researcher and professor at the University of Pittsburgh School of Public Health, isn't relying on traditional research methods to address the problems. She's taking her research to the neighborhood level to figure out why rates are so high and how the community can identify the problem and work toward fixing it.
Burke took time following her presentation to discuss the problem and her approach with City Paper.
There's a lot of talk about the infant-mortality rates in Allegheny County, but it's not a new problem, is it?
The rates are staying about the same but these disparities have been persistent over time. These rates have not really changed over the past several years, and you heard some of that frustration about the need to address them.
What can you as a researcher do differently now to deal with this issue that maybe hasn't been done in the past 20 years or so?
For my colleagues and I, our research paradigm has shifted. Twenty years ago the researcher saw the issue, designed the study, implemented the study and reported some results. Today there is much more community and stakeholder engagement in the process. I advocate for a partnered approach because involving people with "lived experience" and a range of expertise is what will allow us to solve these problems.
Is there something specifically about Allegheny County that is causing this disparity to be so high, or is this a problem that occurs everywhere?
It happens across the U.S. The disparities here are worse than [in] any other developed country.
What makes Allegheny County different is that it's a smaller area than other urban areas. So the dynamic is different, and I think we can do some things here because of our size that you can't do in larger cities.
What is it about your new research model that gives you hope that the work you're doing now will bring change?
Because I'm doing work in partnership with community members and stakeholders, and they are going to hold me accountable. I'm not going to be able to do some research and then just have it published somewhere and walk away.
Because you're not just dealing with data, you're actually on the ground with people whose lives are affected by these high mortality rates and are suffering directly from these disparities, right?
Yes, and they're going to ask me what happened, what did we find. They are invested in this, and they want to see a change and they are excited. And I'm optimistic about this because of that excitement.
In your early research, you asked the community what they saw as contributing factors and they identified things like access to and the cost of healthy food. Are you beginning to see any patterns forming or is it all just part of the puzzle?
Describing it as a puzzle is perfect ... because right now we just don't know what the answer is. But what some of that suggests is that those are areas for future research. A lot of what drives this formative research is talking to the people affected. If they're mentioning things that we aren't aware of or haven't explored, then let's go explore them and see if we can quantify them. But we can't continue to research this problem forever. At the end of the day, I'm driven to make a change.
Once you identify the factors affecting these infant-mortality rates, what has to happen to make sure that solutions are implemented? Who has to step up then?
If you have advocates at the table, and consumers and community leaders, you share the findings with them and you begin to grow the support for change there. It then moves from the community onto the policymakers and the health-care providers. The interesting thing about Allegheny County is you have UPMC and others here. The scope and the reach of UPMC and the other health-care providers are immense, and the hope of building upon that relationship to solve this problem has great promise.