Scaling Involvement to be Inclusive
In order to change the research landscape writ large, researchers who are new to engagement and patient-inclusivity, need to understand what it takes to get there. One of Dr. Mulcahey’s colleagues, Catherine V. Piersol, PhD, OTR/L, chair of the department of occupational therapy, worked with Jenny Martinez, OTD, OTR/L, a former colleague and current public health doctoral student, on guidelines to operationalize and scale community participation.
“The idea is to give researchers some best practices on how to engage stakeholders in the community,” says Dr. Piersol. “But there were no procedures in place, we had to create everything.”
The big question, Dr. Martinez says, is how to best engage and include a whole community in research, especially when clinical trials require larger numbers of patients. A child of immigrants, Dr. Martinez has seen the gap and has been the bridge for family members in her own life. She sees including community members in research as a crucial way to confront the gaps in both health care and research, by increasing minority representation in scientific studies. Her current research centers on people with dementia living in nursing facilities.
Dr. Martinez and Dr. Piersol held a meeting in Philadelphia with a broad spectrum of researchers, funders, and an advisory committee of stakeholders that included nursing home staff, patient advocates, caregivers. The primary goal, she says “was about building trust.” This meeting was a jumping off point for ongoing communication and shared-decision making between researchers and community members. The researchers evaluated these efforts and published the Stakeholder-Centric Engagement Charter to operationalize such engagement. The Charter provides clear procedures flexible enough to be customized to any research objective. It specifically addresses how to develop meaningful collaborations with communities who are often least likely to interact with research, such as those with limited English proficiency, or with distrust in the healthcare system. The Charter covers necessities such as role expectations, study governance and decision-making procedures.
“We are in the infancy of understanding the best ways to engage the community,” Dr. Mulcahey says. “It’s a radical change in academic research but a necessary one that the research community is very interested in getting right.”
This past fall, Dr. Mulcahey helped get some of these ideas out to others in the field as chair of the board of trustees of the American Occupational Therapy Foundation (AOTF), for the first “Engage Summit,” designed to strengthen understanding and skills for community-engaged research. The goal of the meeting was for clinicians, scientists, academicians and community members to come together to discuss and learn about best practices and methodologies for authentic community engagement. Intentionally, a full third of the meeting’s participants identify as a person with lived experiences of disability, chronic conditions, etc.
The Jefferson researchers committed to patient engagement are big believers in the movement. And people are beginning to quantify the advantages, Dr. Mulcahey says. “Research on community-partner inclusion is showing that it takes less time to translate research findings.” That means that putting more time in up front, and including a broad spectrum of voices, ends up helping actual patients sooner, and in ways they find most beneficial.
“It does take investment to include community partners, to set up a structure, to have a coordinator,” Dr. Mulcahey says. “But it’s helping our quality of research and meeting our patients’ needs better and faster.”
Anthony, for one, agrees. The experience of working as part of a research team of bright minds to improve people’s mobility and solve individual problems both big and small has felt very meaningful. “It’s not just for the benefit of me getting better,” he says, “but helping others.”
