University of Manchester Study Using uMotif Next-Generation eCOA/ePRO Data Capture App Reveals Significant Ethnic Disparities in Pain Recognition and Management
Participants identifying as South Asian, Black African, White British used a smartphone-based digital pain self-reporting app created by uMotif to provide feedback that could create qualitative improvements in healthcare and clinical research by reflecting the patient’s lived experience
BOSTON MA and LONDON UK – May 31, 2023 — How people identify, and report pain varies based on ethnicity, according to a University of Manchester study. The study, in collaboration with uMotif, was based on the novel Manchester Digital Pain Manikin self-reporting app which was used by participants to record their pain.
Chronic pain, which affects approximately 28 million people in the UK alone, can create a personal and economic burden. It is essential to accurately measure pain, know its causes, and estimate its impact on people’s lives.
As the study report, Exploring the Cross-cultural Acceptability of Digital Tools for Pain Self-reporting: Qualitative Study, published August 2, 2023 in Volume 10 of the open-access journal JMIR Human Factors describes, researchers aimed to inform the development of cross-culturally acceptable digital pain self-reporting tools by better understanding the similarities and differences between ethnic groups in pain experiences and self-reporting needs.
Professor Will Dixon, Chair in Digital Epidemiology at the University of Manchester, explained, “We are hopeful this study will lead to improvements in accurate and acceptable self-reporting of pain across cultures, so people of different ethnic groups can be assured of actively contributing to better future clinical care and research about their pain, regardless of their background.”
Study participants self-identified as Black African, South Asian, or White British. The researchers demonstrated uMotif’s Manchester Digital Pain Manikin app as a self-reporting tool. Participants used the app to report overall pain intensity on a scale from 0-10; location-specific pain intensity on a 2D gender-neutral body manikin; and a free text pain diary to elaborate on the Manikin drawing.
Four main themes emerged from the interpretive analysis: perceived causes of pain; approaches and attitudes to self-treatment and management; frustration and embarrassment in communicating about pain with others; and, lack of experience with formal pain assessment tools.
The inequalities in pain may be partly explained by the influence of culture and ethnicity, which may affect the way people perceive, experience, and communicate pain. People from non-White ethnic backgrounds had different beliefs and perceptions on pain compared to those from White backgrounds, which resulted in internalizing stigma and developing a negative attitude toward medication and pain reporting. People from a South Asian background were less likely to receive pain medication than White patients, and Black individuals may have different pain management preferences and expectations. Despite these differences, all participants agreed on which aspects of pain reporting were important to self-report, such as pain quality, pain causes, feedback of previous pain reports, and availability of a digital device for pain management.
uMotif Co-founder and Chief Design Officer Ben James (LinkedIn) said, “It was an honor for the Digital Pain Manikin app to be used in such an important study. Once again, our research underscores the absolute necessity of putting the patient first when designing self-reporting apps. Making the effort to understand and meet the patient where they are will enable vast improvements in healthcare, and will open clinical research to a massive and diverse patient population.”
The study was led by Syed Mustafa Ali of the University of Manchester. Also participating from the University were Dr. Rebecca R. Lee, Versus Arthritis Research Fellow, Division of Musculoskeletal & Dermatological Sciences; Professor William G. Dixon, Chair in Digital Epidemiology, Director of the Centre for Epidemiology Versus Arthritis; John McBeth, Professor of Chronic Disease Epidemiology, Division of Musculoskeletal & Dermatological Sciences; and Dr. Sabine Van Der Veer, Senior Lecturer in Health Informatics, Division of Informatics, Imaging & Data Sciences. Completing the team were uMotif Co-Founder and Chief Design Officer Ben James, and Lead Product Designer Sean McAlister; and Dr. Alessandro Chiarotto, Assistant Professor at the Department of General Practice, Erasmus University Medical Center, Rotterdam.
Putting patients first is in uMotif’s DNA. The uMotif eCOA/ePRO platform delivers faster, quality clinical trials and real-world studies by putting patients at the core of research. Through cloud-hosting in the US, Europe and China, the GCP, 21 CFR Part 11 and GDPR-compliant platform supports any study or trial, from Clinical Phase I, II and III studies through to decentralized or virtual real-world studies. Find out how uMotif can improve your clinical research programs and real-world studies at www.umotif.com
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