UIC researchers quantify community engagement

Since her days as a Girl Scout, Shannon Simonovich has served her community.

"I started volunteering at my local community hospital at 14 years old, and I stayed a Girl Scout all the way up through high school," she said. "Community health and engagement have always been integral to my character and my career."

As a registered nurse and researcher in the College of Nursing, Simonovich engages with and learns from her patients. Her latest project will help other researchers do the same.

In August, Simonovich and her interdisciplinary team received $1.74 million from the Patient-Centered Outcomes Research Institute to improve and standardize how stakeholder engagement is documented in research writing. The Universal Engagement Reporting tool will help researchers describe who engaged with a study, what they did and how it served the project.

Engagement science is the study of why patients and other stakeholders become involved in research, how to measure their contributions and which approaches are most effective.

"Everyone deserves to be heard, respected and cared for," Simonovich said. "The way you work with people is just as valuable as the health outcomes your research team is focused on addressing."

The Patient-Centered Outcomes Research Institute is a nonprofit organization that funds research designed to prepare patients and their caretakers to make informed health care decisions, addressing physical needs as well as mental, financial, social and emotional health.

Inspired by the institute's expectations for research partnerships, the tool will document how research teams recruit, collaborate with and compensate community partners, especially those from groups that have been historically underrepresented in research studies.

Practices like compensating fairly and including patients in decision making are critical to research partnerships but are not often quantified, Simonovich said. This project hopes to track and standardize metrics like these, among others.

To develop and test the tool, Simonovich and her teammates will collaborate with participants and advisors from three stakeholder groups: patients who have participated in research, scientists studying engagement in patient-centered outcomes research and academic journal editors and publishers.

Community co-investigator Chahdael Foreman is a social worker, therapist and owner of Ad Meliora Psychotherapy practice in Toledo, Ohio. To the team, she contributes her unique personal and professional perspectives.

"I do not have a traditional research background. I am a person with lived experience as a business owner, a parent and a person of color," she said. "My job is to round out the science with a layperson's perspective.

"We, as community members, have not historically had a say in how we get to experience health care. In this role, I have the unique opportunity to use my lived experience to help change healthcare to empower and involve communities in improving their health outcomes."

Simonovich hopes that clear expectations for reporting on engagement science will encourage researchers to be thoughtful about how they plan, execute and document their work.

"If we can use this opportunity to create a gold standard for what engagement should look like and how we should write about it, it will benefit the researchers and patients alike," she said.

The Universal Engagement Reporting Tool will be published in the EQUATOR Network library. Its website will include accessible online training tools.

"The digital training series will emphasize core principles of engagement science, including transparency, co-learning, power-sharing and high-quality reporting, and is designed to be reflective of best practices when engaging with individuals from underrepresented groups," Simonovich said.

Dual project lead Joyce Edmunds is a professor and department chair at the University of Massachusetts Boston and editor-in-chief of the Journal of Obstetric, Gynecologic, & Neonatal Nursing. She'll lead a special journal issue dedicated to studies demonstrating real-world use of the Universal Engagement Reporting Tool.

"As an editor, I see how often community engagement is mentioned but rarely described in enough detail for readers to learn from it," Edmonds said. "This tool will provide a clear and consistent way to report this work, and we're building it alongside the editors and reviewers who set the standard for rigorous, transparent reporting."

Additional research team members include co-investigators Karen Tabb Dina, a University of Illinois social work researcher and president of the National Association of Perinatal Social Workers; health services researcher Thomas Mackie of the University of Massachusetts Amherst; and Kara Zivin, a University of Michigan health policy researcher who brings both scholarly and lived experience to her role as engagement lead. The University of Massachusetts Boston, the University of Massachusetts Amherst and the University of Michigan are subcontracted organizations.