This is the fifth post in a series sharing the story of the process, challenges and lessons learned in a pilot study aimed at applying clinical research in a community setting.
Lakeland Health. Photo Credit: Flickr/Barton Marlow Company.
As the Sorter School Project played out, Lynn Todman, PhD, and her team, reflected on the institutional and other challenges that impacted the community-based investigation. Three challenges are worth mentioning because they likely manifest in other transdisciplinary efforts to translate clinical science into community practice. They are challenges related to Institutional Review Board (IRB) processes; the professional diversity of the project team; and race, class, gender and sexual orientation.
Navigating Institutional Review Board Processes
This project required authorization by the IRBs of Lakeland Health and Andrews University as well as support by the Office of Human Subjects Protections Research of the National Institutes of Health. Lakeland Health served as the IRB “of record”, meaning that the project was reviewed and received official and final approval from the Lakeland IRB.
Like most hospital-based IRBs, Lakeland’s typically reviews research projects that are clinically oriented. These tend to involve, for instance, the testing of new drugs and surgical procedures. Hospital IRBs do not involve community residents as research collaborators. Rather, research is typically conducted on “subjects” who are not viewed as collaborative partners. Moreover, community-based participatory processes, such as those we sought to employ in this pilot and which are critical for building collaborative trust, call for authentic community input in every aspect of the project, including hypothesis/question formation, design, implementation and evaluation. Such input is virtually non-existent and even considered inappropriate in traditional clinical research protocols. This affected the project in many ways. For instance, the original project plan to include Sorter School staff in the consent, data collection and data analysis processes had to be abandoned due to IRB concerns regarding research integrity.
The divergent perspectives on what constitutes research contributed to communication challenges, and tensions and frustrations between the project team and the IRB. They also slowed the project down. The perception of the IRB was that the project was too loosely defined and provided inadequate privacy protections and protocols to safeguard the project participants from possible health risks. While the project team perceived the IRB to be paternalistic and ill-equipped to evaluate a community-based, community-engaged project such as ours. As a result, the IRB was unable to offer the kinds of constructive guidance and advice that would have been helpful in the design and implementation of the project. One gratifying outcome of the learnings during the process is that the Lakeland IRB has undergone training in the review of social science-based research efforts that have a strong community engagement component.
Communicating Across Disciplines and Professional Lenses
The second significant challenge emanated from a characteristic of the project that was, ironically, critical to its success: the professional diversity of the project team. The team was led by an urban planner, but composed of nutritional neuroscientists (i.e., psychologists and psychiatrists), registered dietitians and nutritionists, exercise scientists, cooks and chefs, school teachers and administrators, a supply chain expert, meal transport professionals, and more than a dozen lay volunteers. These team members brought different knowledge bases and skills to the project. Their work and contributions were informed by different, sometimes conflicting, conceptual frameworks and worldviews. Team members also spoke in different professional “languages”. Despite these challenges which were, at times, punctuated by spirited philosophical disagreements and dissimilarities in practices and approaches, the diversity was critical to the successful execution of the project. It was imperative that each team member brought their professional lens to the project. But, it was also necessary that each be willing to relinquish the familiar and transcend professional comfort zones to collaborate with others in this transdisciplinary effort.
Engaging Communities across Race, Class, Gender and Sexual Orientation
The team members also had varied levels of experience in engaging communities, especially low income, underserved, African American communities. Throughout the project, issues of race and class were salient. Examples included IRB personnel referring to “those people”; project team members exhibiting a noblesse oblige-like paternalism; project participants “calling out” team members’ “whiteness”; volunteers’ visible fear and social distance when the children acted out (as children often do); and, team members’ helplessness when children shared deeply personal stories of pain and loss that seemed otherworldly and inappropriate for people so young.
Issues of gender, sex and sexual identity exhibited themselves in complex ways as well. One salient example was a 15-year old who reveled in sharing details of his sexual relationship with his mother’s best friend with the project staff and volunteers, who were largely middle-aged white women. Another was the self-separation of girls who identified as gay. And, a third example was a group of girls who were struggling alone in assessing their sexuality with no evident support system. These issues added to the complexity and challenge of this project because there were no inbuilt mechanisms to address them.
The issues that arose in this pilot – the lack of IRB familiarity with basic principles and goals of community-based participatory research, challenges associated with transdisciplinary collaboration, and navigating the social complexities of race, class, gender, sex and sexual identity – are likely to emerge in most efforts to translate clinical science into practical solutions to community problems. In highly controlled clinical settings, these issues are not present. But if we are to effectively translate the wealth of clinical science into real world settings to solve real would issues, figuring out how to effectively address these issues is crucial.
Post by Sorter Team.