Jessica Holzer, PhD
Assistant Professor of Health Professions, Hofstra University
Research, especially that conducted within universities and colleges, is aimed at generating knowledge to help move the human race forward. This is true across disciplines, from the humanities to the sciences. In the health sciences, in particular, research is essential for developing everything from community-based gun violence prevention programs to new and more effective cancer drugs. In “traditional” health research, researchers identify a topic or agenda based on their interests, on the state of the science and the work of others, and on the funding or organizational priorities in their field. While this strategy has produced the amazing breakthroughs in health we have experienced to date, researchers and others are becoming increasingly aware of the limitations of this “traditional” model.
One such limitation is the amount of time it takes for successful research findings to be translated into practice in communities and clinics. Though estimates vary, a time lag of 17 years has been widely reported in the health literature. That means that from the point of a demonstrated benefit of a new drug or practice, it can take up to 17 years for practitioners, such as doctors, nurses, and social workers, to begin employing the drug or practice. For those 17 years, patients may be receiving less-than-optimal care; potentially lifesaving resources may be unavailable; and unnecessary costs, both human and financial, may accrue. Shortening this time lag has become a priority for the National Institutes of Health and other research-funding organizations whose missions include improving health and welfare.
A further limitation of the “traditional” model of research lies in the way topics are identified for study. In the “traditional” model, the researcher and their team, the funding agency, and the organization may all have input into the research priorities, but there is little or no avenue for the broader community to voice their priorities and have them met by research. This lack of equity in the research process can lead to research on topics of concern to researchers, but not high priorities in communities. At its best, this means there may be a missed opportunity for communities to lend their expertise to the research process, but at its worst, it can lead to abusive and harmful research that takes communities and their members for granted.
In the health sciences, in particular, research is essential for developing everything from community-based gun violence prevention programs to new and more effective cancer drugs.
Examples of abuse range from the infamous Tuskegee Syphilis Study to the more recent example of the Havasupai American Indian tribe. In the Tuskegee study, black sharecroppers in Macon County, Alabama, were deceived and manipulated for 40 years, during which time the United States Public Health Service observed the effects of untreated syphilis on their health without regard to the implications on them, their families and the wider community. In 1989 members of the Havasupai tribe in Arizona gave their blood to learn more about diabetes mellitus. Their blood was then unknowingly used to research schizophrenia, inbreeding, and migration, topics with strong personal and cultural taboos for the tribe.
These cases are examples of the most egregious forms of abuse communities face in the name of scientific inquiry, but many communities, especially communities of color and those suffering under poverty, have experienced research that uses them as participants but does not view them as partners. That means the priorities of communities are often neglected, findings from the research are never disseminated to the communities, and the most pressing needs in the communities remain unaddressed.
As a postdoctoral fellow at Yale University, in New Haven, Connecticut, I experienced this disconnect firsthand. I was and have long been interested in increasing physical activity in communities suffering from high rates of diabetes, obesity and heart disease. New Haven, where the poorest neighborhoods have rates of diabetes twice the national average, seemed like an excellent target for my research. In the process of trying to understand why New Haven residents were not physically active, I learned that in some neighborhoods as many as 70 percent of people feel unsafe leaving their house after dark, and 30 percent do not feel safe outdoors during the day. Lack of adequate lighting, violence, illicit drug use and trafficking were some
of the reasons cited by community members for not feeling comfortable being outside their homes, and being physically active, in their neighborhoods. Suddenly, to address physical activity, I needed to focus on violence reduction. I was lucky that I had been prepared by my training to make such a pivot. But in many cases, researchers do not know how or do not feel equipped to make such a striking change in their research priorities.
Initiating an Interest in Community-Based Research
My interest in community-based research began during my doctoral studies at the Johns Hopkins Bloomberg School of Public Health in the Health Policy and Management Department, where my concentration was in bioethics and policy. My interest in ethics sharpened my desire to examine the intersection between research and justice. At the time, the National Institutes of Health had begun the Clinical and Translational Science Award program, which provided multimillion-dollar grants to universities and research institutions for the creation of translational institutes. The purpose was to address the time lag limitation of “traditional” research mentioned above. A key component, therefore, was a community engagement core team and a plan for how the university would engage communities and create partnerships to facilitate the performance and translation of community-based research.
For my doctoral work, I evaluated the proposals universities made in their funding applications, and I compared them to the actual practices the universities committed to for the five years of their funding. I found that the proposed work was usually much more optimistic than the work that was actually completed. These universities, some of the most renowned in the world, spent much of their five years developing the capacity to conduct research with communities. They focused on educating faculty members on how to do engaged research in respectful and equitable ways, and they devoted considerable resources to teaching interested community members about what research is and what the process demands of researchers and partners. By the end of the first five years of funding from the NIH, most of the universities were just ready to begin the hard work of sustained engagement in research.
Community-Based Research at Hofstra
I was excited to come to Hofstra, in part because I saw the Center for Civic Engagement as a resource to overcome exactly the limitations I had seen at universities during my doctoral studies. Now, with the appointment of Dr. Bob Brinkmann as vice provost for scholarship and engagement, I’m more excited than ever at the prospect of Hofstra leading the way in engaged research and teaching. Already, in my two years at the University, I have had the opportunity to work with fellow faculty to develop community-based research projects. The first, Car-less Long Island, of which I am a board member, is a nonprofit organization started by Dr. Sylvia Silberger, chair of Hofstra’s Math Department. The organization’s goal is to improve resources for active transportation, such as walking, biking and busing, on Long Island. We held our inaugural Bike-to-Work Parade in May 2016, in conjunction with Hofstra’s Dutch Festival and with the support of the University. Over the summer, with grant support from the Provost’s Office and the School of Health Professions and Human Services, I worked with Car-less Long Island to rate and catalog the state of pedestrian and cyclist infrastructure along Sunrise Highway. The project is expanding to other parts of Long Island, with a Girl Scout troop in New Hyde Park considering doing its own rating project, and new corridors being identified within Nassau County.
I have also been working with Dr. Martine Hackett of the Hofstra Department of Health Professions; Dr. Tomeka Robinson of the Hofstra Department of Rhetoric; Jacob Dixon, CEO of Choice for All; and representatives from Sustainable Long Island and NuHealth on a new community-based participatory research initiative, the Long Island Community Academic Research Partnership (LICARP). With support from the National Center for Suburban Studies at Hofstra University, and involvement of community members throughout Roosevelt, we have begun a health needs assessment of the neighborhood. We have invited Roosevelt residents from many demographics (over 65, parents, recent immigrants, and youth) to describe in focus groups what their health needs are, where they receive health care, and what resources they feel the community needs. Trained high school students have served as focus group note takers and leaders. The findings will be the first step in identifying the health needs and priorities of Roosevelt, which will help the partnership identify topics for research and intervention.
It has been gratifying to begin my career at an institution that values community-engaged research. I am excited to continue working with Car-less Long Island and LICARP to identify solutions for some of the most pressing health needs affecting our county and communities on Long Island. I look forward to seeing where Hofstra is in five and 10 years, how we have partnered with our communities, how we have put our resources to good use locally, and how we have created a better future for our communities, our students, our faculty, and all of Long Island.