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Over the past two decades, scientific innovation has translated cutting-edge science into real progress for people living with immune-mediated diseases, such as Crohn’s disease, ulcerative colitis, psoriasis, and psoriatic arthritis.[1] However, disparities in care may prevent people of color, particularly those who identify as Black, Hispanic, Asian, and Indigenous, from benefitting from the full potential of that innovation.

As a driver of scientific advancement, the healthcare industry has an opportunity and a responsibility to continue to evolve its approaches to reach more patients and to shape a more equitable future in care.

Drawing on its 20-year legacy in the treatment of immune-mediated diseases, Janssen Immunology is at the forefront of effecting positive change in care. In the journey to shaping an equitable future in immunology, three actions are key.

Engage in active listening

Inequities in care for those who identify as Black, Hispanic, Asian, and Indigenous may mean missed or delayed diagnoses and a decreased likelihood of receiving treatment with advanced therapies.[2],[3] While more than half of white adults with psoriasis seek treatment from a dermatologist, just 47 percent of Hispanics and just 38 percent of non-Hispanic minorities, including Black, Asian, native Hawaiians, Pacific Islanders, and others, do the same.[4]

It is important to know more about these inequities and why they exist. This can be done by engaging in active listening to offer space to people who are impacted most to share their experiences. One way Janssen Immunology is doing this is through Determi-Nation, a new kind of health movement comprised of an inspiring and diverse group of healthcare providers, patients, and advocates passionate about advancing health equity.

Designed to foster equity in immunology, the goal of Determi-Nation is to inspire better understanding of the experiences of people of color living with psoriasis and co-create tangible solutions that tackle a variety of diagnosis and treatment challenges.

Take an inclusive data-driven approach to research

The next step is to incorporate learnings into research and back up qualitative listening with quantitative data that reinforce the patient perspective. For example, real-world evidence studies can help uncover gaps in care, determine why they exist, and identify culturally appropriate interventions for underrepresented communities.

Janssen Immunology’s approach aims to address these gaps by incorporating input from patients at every stage — from informing research strategy, real-world evidence study design to interpretation of study results and, in some cases, as authors whose points-of-view can enhance the research.

It is also important to recognize that not everyone experiences disease the same way, and it’s essential that clinical studies include people with a variety of lived experiences and diverse identity markers like race, ethnicity, age, gender, and sexual orientation.[5],[6]

Through Janssen Immunology’s Patient Engagement Research Councils, for example, the organization is building lasting relationships with diverse groups of people living with chronic conditions so that their expertise can inform research. This model aims to create a new standard where diverse populations are fully represented in clinical research, with studies underway at Janssen Immunology that advance this promise.

Apply what we learn to drive equitable care

With patients at the center of the listening and research-driven approach, the next step is to translate insights into solutions. Patients have shared with Janssen Immunology that they often don’t know where to turn for skin health advice, which was confirmed through research — Black, Hispanic, and other people of color are 50 percent less likely than other patients to see a dermatologist for the same conditions.[4],[7]

This is compounded by a lack of representation among healthcare specialists. In 2020, just 65 of 796 applicants for dermatology residencies were Black or African American and only 39 applicants were Hispanic, Latino, or of Spanish origin.[8],[9]

To address this gap, Janssen Immunology collaborated with the American Academy of Dermatology and Johnson & Johnson Consumer Health to launch Pathways: Inclusivity in Dermatology to increase the number of practicing dermatologists in the U.S. who are from Black, Latino, and Indigenous communities. The program works to create a more diverse and inclusive specialty by engaging students in programming that builds the skills, knowledge, and interest to pursue a career in dermatology.

Across immune-mediated diseases — whether dermatology, gastroenterology, or rheumatology — it’s imperative to see this same iterative, action-oriented process that places patient perspectives at the forefront: listen, study, solve. Equitable care is an ambitious goal that requires ongoing effort. For Janssen Immunology, that means relentlessly advancing care.

References

[1] National Multiple Sclerosis Society. What is an immune-mediated disease? 2022. Accessed June 23, 2022. Available at: https://www.nationalmssociety.org/What-is-MS/Definition-of-MS/Immune-mediated-disease
[2] The National Psoriasis Foundation. Psoriasis Statistics. Accessed March 29, 2021. Available at: https://www.psoriasis.org/psoriasis-statistics/
[3] Alexis AF, Blackcloud P. Psoriasis in skin of color: epidemiology, genetics, clinical presentation, and treatment nuances. J Clin Aesthet Dermatol. 2014;7(11):16-24.
[4] Fischer AH, Shin DB, Gelfand JM, Takeshita J. Health care utilization for psoriasis in the United States differs by race: An analysis of the 2001-2013 Medical Expenditure Panel Surveys. J Am Acad Dermatol. 2018 Jan;78(1):200-203
[5] National Institutes of Health. National Institute on Minority Health and Health Disparities. Diversity & Inclusion in Clinical Trials. 2022. Accessed June 16, 2022. Available at: https://www.nimhd.nih.gov/resources/understanding-health-disparities/diversity-and-inclusion-in-clinical-trials.html
[6] Deloitte. Why improving inclusion and diversity in clinical trials should be a research priority. 2019. Accessed June 16, 2022. Available at: https://www2.deloitte.com/us/en/blog/health-care-blog/2019/why-improving-inclusion-and-diversity-in-clinical-trials-should-be-a-research-priority.html
[7] Tripathi R, Knusel KD, Ezaldein HH, Scott JF, Bordeaux JS. Association of Demographic and Socioeconomic Characteristics With Differences in Use of Outpatient Dermatology Services in the United States. JAMA Dermatol. 2018;154(11):1286–1291
[8] American Academy of Dermatology Association. Pathways: Inclusivity in Dermatology to increase number of Black, Latino, and Indigenous physicians in dermatology. 2022. Accessed June 23, 2022. Available at: https://www.aad.org/news/pathways-inclusivity-in-dermatology-launch
[9] American Academy of Medical Colleges. Report. Diversity in Medicine: Facts and Figures 2019. Accessed July 19, 2022. Available at: https://www.aamc.org/data-reports/workforce/report/diversity-medicine-facts-and-figures-2019