Bridging cultures in research: Dr. Cheryl Barnabe's roadmap for respectful Indigenous collaboration
Direct collaboration and communication with Indigenous leaders and communities necessary for conducting effective medical research (1,500 words, 7 minutes, 30 seconds)
Researchers must work with Indigenous communities and interact in culturally appropriate ways when developing studies, Dr. Cheryl Barnabe told the 3rd annual Indigenous Skin Spectrum Summit. Her advice was based on her experience studying the delivery of arthritis care to the Siksika Nation.
Dr. Barnabe is a member of the Otipemisiwak Métis Government (formerly Métis Nation of Alberta), a rheumatologist, and a professor in the departments of medicine and community health sciences at the Cumming School of Medicine, University of Calgary. She is the deputy director of the McCaig Institute for Bone and Joint Health and a Canada Research Chair in rheumatoid arthritis and autoimmune diseases. Her research program focuses on equity in health service delivery and arthritis outcomes, most specifically for Indigenous populations in Canada.
To achieve cooperation and community buy-in, researchers who plan to conduct research in Indigenous populations need to learn about the community, the history of research with Indigenous peoples, and the difficulties introduced by Western research, said Dr. Barnabe. This process involves meeting with leadership from the community to decide on research priorities and if there is even a place for the research team in the community. If it is agreed that there is a place, then the researchers must find a way to start research activities and to work with the community to decide how to set up the study, who will advise on and participate in the research, how will recruitment be organized, and who will participate in analysis and interpretation.
Dr. Barnabe also said it is vital to collaborate with the community to decide who will receive the data and findings and who will have permission to discuss them once the research is complete.
“Then, along that way, we also advise building on the trust and making sure that we are upholding our roles as researchers or as clinicians, but also taking moments to actively reflect on how we have interacted with the community and where we can do better,” said Dr. Barnabe.
Bottom Line: Researchers need to work with the Indigenous community during study development and involve Indigenous stakeholders in deciding who should participate and who can use the data.
From the literature on Indigenous dermatology
The epidemiology of atopic dermatitis and psoriasis in the Indigenous people of Brazil
Researchers conducted this study using data from the Information Systems for Indigenous Health Care (SIASI) database to assess the prevalence of atopic dermatitis (AD) and psoriasis in Brazilian Indigenous people.
Among 775,995 Brazilian Indigenous people, the researchers identified 15,055 with AD and 953 with psoriasis.
The majority of AD cases (9,987) were in children. In the Yanomami Brazilian Sanitary Indigenous District (DSEI), Brazil's most remote Indigenous region, the prevalence of AD was significantly lower compared to the DSEIs located near major urban areas in the Southeast and South of Brazil. The Yanomami DSEI also had a lower prevalence of psoriasis than DSEIs in the Central West, South East, and South of Brazil.
As well, the prevalences of AD and psoriasis in Indigenous people were lower than in the general population. The authors write this may be due to differences in genetics and environmental factors.
Advanced melanoma presentation and disease-specific survival disparities among disaggregated Asian American, Native Hawaiian, and Pacific Islander populations
The authors of this paper note the existing melanoma research commonly aggregates Asian American (AA) and Native Hawaiian and Other Pacific Islander (NHOPI) individuals into a single category, and this practice limits knowledge surrounding differences in melanoma outcomes among disaggregated AA and NHOPI populations.
To address this issue, investigators examined differences in stage at diagnosis and melanoma-specific mortality among aggregated and disaggregated A.A. and NHOPI populations within the U.S. Surveillance, Epidemiology, and End Results 17-registries program to characterize their melanoma-related health disparities.
They identified 206,707 AA, Native Hawaiian, Pacific Islander, and non-Hispanic White patients with first histologically confirmed primary malignant cutaneous melanoma diagnosed from 2004 through 2019.
A.A. and NHOPI individuals were generally younger and had higher acral lentiginous and lower extremity melanoma rates. The authors also found aggregated A.A. and NHOPI populations were significantly more likely to present with distant metastases than non-Hispanic White patients. Among disaggregated groups, Filipino (adjusted odds ratio (aOR)=3.81, 95% CI=2.37-6.13), NHOPI (aOR=3.93, 95% CI=2.36-6.54), and Vietnamese patients (aOR=8.69, 95% CI=4.35-17.40) had significantly higher odds of distant metastases than non-Hispanic White patients. Higher odds of distant metastases were also observed compared to Chinese patients among Filipino (aOR=3.33, 95% CI=1.49-7.47) and Vietnamese patients (aOR=7.69, 95% CI=2.93-20.20).
Investigators observed significant survival differences among populations, with the lowest five-year melanoma-specific survival rate observed in Vietnamese patients (68%). Among disaggregated groups, Filipino (aHR=1.64, 95% CI=1.28-2.10) and NHOPI (aHR=1.88, 95% CI=1.44-2.46) patients had more significant melanoma-specific mortality than non-Hispanic White patients.
Pigmented squamous cell carcinoma in a non-photo-exposed area of an Indigenous woman
This case report details a 67-year-old Indigenous woman living on a reservation in the north of the state of Espírito Santo, Brazil, previously hypertensive and a smoker, who reported an erythematous area on her left thigh that had been there for more than ten years. The area had radial growth and mild pruritus. When physicians examined her, they found an infiltrated erythematous, brownish, hyperkeratotic plaque on the proximal portion of the left thigh, a non-photo-exposed area.
Physicians found no evidence of solar elastosis around the lesion and did not identify inguinal lymph node enlargement. Dermoscopy showed deposits of a black pigment, erythema, central linear vessels, glomerular vessels, and peripheral striae.
Their initial diagnostic hypotheses were Bowen’s disease, melanoma, and verrucous syndrome. Cultures for fungi and bacteria were negative, and histopathological evaluation of an incisional biopsy showed compact hyperkeratosis, acanthosis, impaired cell maturation, and pigment deposits without an increase in melanocytes. Investigators also detected atypical keratinocytes and mitoses in the middle portion of the epidermis, confirming pigmented Bowen’s disease.
An initial treatment regimen of topical imiquimod 50 mg/g cream to reduce the lesion and facilitate excision did not respond satisfactorily. Physicians excised the lesion with a Limberg flap, and the anatomopathological analysis showed invasion of the deep reticular dermis, characterizing pigmented squamous cell carcinoma. Immunohistochemistry showed positivity of keratinocytes for epithelial membrane antigen and p53 and p63 proteins, confirming the diagnosis.
VIDEO: Josée Lavoie: Amplifying the voices of Arctic Indigenous peoples in research
In a presentation hosted by the John Sloan Dickey Center for International Understanding at Dartmouth College in Hanover, N.H., Dr. Josée Lavoie, a Professor at the Max Rady College of Medicine, Community Health Sciences, University of Manitoba, discusses what non-Indigenous researchers need to know about working with Indigenous populations.
Nominations for the 2024 Women in Dermatology Honour Roll closing soon
The 2024 Women in Dermatology Honour Roll nomination deadline is this coming Friday, July 26, 2024.
This Honour Roll acknowledges the leadership of a select group of Canadian physicians. It recognizes female dermatologists in Canada who have made significant contributions to the specialty, inspire others and serve as mentors and role models.
The 2024 honourees will be profiled in the upcoming Third Edition of Women in Dermatology, published by The Chronicle of Skin & Allergy.
Nominees should be female dermatologists who, throughout their careers, have made a lasting impact on others in the field of dermatology, served as a source of inspiration to residents, colleagues, and patients, and demonstrated extraordinary dedication, leadership, and commitment to the principles of dermatologic care.
To learn more or to obtain a nomination form, please go to the following link:
At the intersection of skin and society
The Honorable Gary Anandasangaree, Canada’s Crown-Indigenous relations minister, has apologized to nine First Nations in Manitoba and Saskatchewan following decades of the Dakota and Lakota being labelled as refugees, reports Global News.
On July 15, Anandasangaree said the groups should have been formally recognized as First Nations in Canada in a ceremony at Whitecap Dakota First Nation, south of Saskatoon.
“On behalf of the Government of Canada and all Canadians, we seek to begin to mend this injustice with three simple words: we are sorry,” he said.
“We acknowledge you have been treated as second-class First Nations, as strangers here on your homeland in Canada, a Canada you helped defend, build and develop.”
In his speech, Anandasangaree noted that the Canadian government never recognized these peoples as Aboriginal Peoples of Canada under the Constitution. Instead, when the Dakota and Lakota peoples were defeated in battle by the U.S. in the 1860s and 1870s and moved north into their ancestral lands, the Canadian government viewed them as strangers from the United States seeking refuge from the American military. Canada ignored their title to the land, did not invite them to sign treaties, and they received no treaty rights.
Anandasangaree said Canada will work with the First Nations to develop treaties and agreements to affirm their rights in the Constitution.
Registration is open for the 2024 Colloquium on the Black Patient
In recognition of persistent gaps in dermatologic training concerning skin of colour, the Colloquium on the Black Patient will discuss topics in dermatology specific to Black patients and recent progress in advancing the inclusion of diverse skin tones in research and medical education.
This live discussion will be held virtually on Saturday, Aug. 17, 2024, from 10 a.m. to 1:30 p.m. E.T.
The Colloquium will cover the state of therapies, research, and education in dermatology for skin of colour, focusing on progress in Canada.
This non-accredited program will be available to attend at no charge, thanks to the support of our sponsors.
More details are available at this link.
This week
July 24 is International Self-Care Day
July 26 is National Disability Independence Day in the U.S.
July is National Minority Mental Health Awareness Month in the U.S.
Something to think about in the week ahead . . .
—Werner Herzog, German documentary film director (1942-present)
Next week
In a recent international study, researchers investigate the perception of skin cancer risk and sun protective practices in individuals with vitiligo.
If you like Skin Spectrum Weekly, why not check out Chronicle’s other publications, podcasts, and portal?
Established in 1995, The Chronicle of Skin & Allergy is a scientific newspaper providing news and information on practical therapeutics and clinical progress in dermatologic medicine. The latest issue features:
Dr. Jerry Tan (Windsor, Ont.) shares his thoughts on recent findings showing that benzoyl peroxide in acne products can break down into benzene when stored in high-temperature conditions.
Drs. Andrei Metelitsa (Calgary), Geeta Yadav (Toronto), and Rahul Shukla (Hamilton, Ont.) review several current innovations in cosmetic dermatology.
Drs. Jason Rivers (Vancouver), Cheryl Rosen (Toronto), Peter Hull (Halifax), and Jennifer Beecker (Ottawa) provide an overview of essential news in melanoma, including the use of artificial intelligence to support screening.
Plus regular features, including the popular column “Vender on Psoriasis” by dermatologist Dr. Ron Vender.
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The Women in Dermatology e-newsletter updates readers with new findings concerning dermatologic issues affecting women and the female dermatologists who care for them. Read the current issue here.
Season three of the Vender on Psoriasis podcast with Dr. Ron Vender has begun. Listen to the new season here. In episode five, Dr. Vender discusses whether vitamin D influences psoriasis severity, sex differences in psoriatic inflammation itch, and the risk of psychiatric disorders associated with acitretin.
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