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Revolutionizing Clinical Pain Research: A Shift Toward Patient-centered Engagement

In the field of clinical pain research, a transformative approach is reshaping how to design and conduct clinical studies. Traditionally, while patients have been central to providing data through their experiences as study participants, they had a very limited role in informing the research questions the studies ask, study design and conduct, or research dissemination practices.

Recognizing that meaningfully engaging patients as true partners in research can elevate research quality, patient-centeredness, equity, and outreach – the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) brought together a diverse group of participants from academia, industry, funding and regulatory agencies, and people with lived experience (PWLE) of pain, to developed recommendations for advancing patient engagement in clinical pain research. The workshop was co-developed and co-chaired by a clinical scientist and PWLE/patient advocate. The output of the group’s work is “Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations,” a paper that offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, and includes recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.

Simon Haroutounian, PhD, MSc, chief of clinical pain research at the Washington University Pain Center, emphasized the significance of this shift. “This transdisciplinary work marks a significant step forward in highlighting the critical role of patient engagement in the research process, and offering researchers actionable tools to elevate their research,” he said. 

“Incorporating patient experiences as a core element in research allows us to gain insights and perspectives that might have been previously overlooked, leading to research that is more centered on patient needs.” Haroutounian also serves as the Chief of the Division of Clinical and Translational Research (DoCTR) in the Department of Anesthesiology at Washington University School of Medicine in St. Louis.

Haroutounian and Katie Holzer, PhD, LCSW, Assistant Professor of Anesthesiology at WashU Medicine, spearheaded the development of a comprehensive framework for patient engagement in clinical pain research specifically. This framework outlines detailed steps for engaging patients and methods for effectively measuring and reporting this engagement. 

“The steps outlined in this paper provide researchers with guidance on meaningful patient engagement throughout the entire lifecycle of the research process, beginning in the strategic planning phase through connecting with community members, building reciprocal relationships, providing training and clear descriptions of roles, supporting opportunities for joint dissemination, and evaluating the effect of patient engagement to inform and optimize future research practices,” said Holzer. “Providing these steps to researchers and their subsequent engagement of patient partners can have positive implications on the field – among them, helping to ensure that clinical research reflects the needs and values of patients and expanding the diversity, inclusion and equity in clinical research.”

Haroutounian and Holzer aim to further enhance patient engagement in trials, test the dissemination and uptake of research findings, and address geographical, socioeconomic, and cultural differences of such practices in future research. Their ongoing efforts seek to enhance the significance and impact of clinical pain research by prioritizing patient perspectives.

“Simon and Katie’s effort is crucial as it underscores the value researchers gain from involving patients with firsthand experiences of pain throughout the research process, including design, execution, and dissemination,” said Burel R. Goodin, PhD, professor of anesthesiology and president-elect of the U.S. Association for the Study of Pain (USASP). “This approach not only enriches research but ensures that insights are deeply rooted in real-world experiences.”