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Community Engaged Research Studies What's Meaningful, Not Just What's Measurable

December 01, 2015

Brightwood Health FairResearcher Sarah Goff, MD wants to research health issues that matter most to the Springfield community.

To that end, she and her team aim to build a collaborative research community of patients, providers, community leaders, and researchers that can help guide the design of future research proposals.

Springfield Faces Many Health Challenges

Springfield residents experience disproportionately poorer health that the rest of Massachusetts. Compared to the rest of the state, more adults in Springfield are overweight or obese, have diabetes, or are hospitalized for hypertension or stroke.

Having grown up in the Springfield area, Goff understands that the community faces many threats to health that are closely linked to poverty and other social factors.

Understanding Community Perspectives and Priorities

Dr. Sarah Goff
Dr. Sarah Goff

Dr. Goff was awarded a 2015 Patient Centered Outcomes Research Institute (PCORI) grant for Project ACCESS: A Collaboration to Develop Capacity for Community-Engaged Research in Springfield.

She is on the faculty of the Center for Quality of Care Research.

To get an understanding of these factors, focus groups were conducted with three groups of stakeholders—patients, providers/researchers and community leaders—in the spring and summer of 2015.

There was a broad consensus among stakeholders on the top health issues facing their community: mental health, including depression and opioid addiction; chronic diseases, such as diabetes, obesity, and COPD; maternal-child health, such as premature birth and teen pregnancy; sexually transmitted infection; and disability.

Focus group members identified many sources of these health issues, including lack of access to resources, such as healthy food and transportation; economic factors, including poverty and lack of jobs; difficulties dealing with the healthcare system and insurance; racism, low literacy, crime and incarceration.

“Not surprisingly,” says Goff, “race, gender, politics, and health intersect to contribute to health disparities.”

Asking the Important Research Questions

Community engaged research appeals to Goff because of its potential to produce knowledge that is useful and pertinent to patients’ lives.

This type of research is challenging, however. Focus groups brought up the difficulty of balancing the differing needs of stakeholders and researchers, and the need to study what matters to the community, not just what can be measured. In addition, it is important that the community not feel that it is “being researched upon.”

But Goff has learned that there is substantial enthusiasm for community engaged research among the stakeholders, as well as a belief that a group of dedicated stakeholders can address some of the challenges of moving this type of research forward.

Building Sustainable Partnerships

Sustaining a research network over time is an acknowledged challenge of this kind of research.

To help build authentic relationships, Project ACCESS is partnering with organizations long committed to the health of the Springfield community—the not-for-profit Partners for a Healthier Community and the Springfield Department of Health and Human Services—to identify community leaders.

They have also created a twelve-member Advisory Board, with a “really rich mix of contributors” from community organizations, academia and Baystate, that has already met twice.

Project ACCESS, Goff says, will “unite the knowledge, expertise and resources of these unique groups so that future research designed to improve the health of Springfield’s vulnerable populations engages patients and stakeholders throughout the entire research process.”

> More about Baystate Health's involvement in their community