- By FYH News Team
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Indigenous women face higher gestational diabetes rates, highlighting the intergenerational impact of diabetes.
However, the proportion of people from many ethnic groups enrolled in diabetes clinical trials remains negligible.
The UK Prospective Diabetes Study similarly underrepresented minority groups with the highest risk of macrovascular disease: 5% of patients were Indian Asian, 8% were Afro-Caribbean, and 1% were classed as other.
These studies are applied to all people globally despite population level data demonstrating variable cardiovascular risk and mortality outcomes by race, independent of therapy.
Recent trials of SGLT-2 inhibitors and GLP-1 receptor agonists showed similar rates of enrolment of diverse racial groups.
conducted in China, demonstrated that dual antiplatelet therapy prevented recurrent stroke compared to aspirin alone; its generalisability was questioned based on the ethnicity of its patient population. The POINT trial,
conducted in centres across North America, Europe, Australia, and New Zealand, showed similar results to CHANCE. POINT was deemed relevant to a wider patient population, although is not evident why its population (75% White, 20% Black, less than 4% Asian, and
The prevalence of type 1 diabetes is also rising worldwide, highlighting the need for diabetes research that is inclusive and representative of the world. However, researchers in low-income and middle-income countries have difficulty in accessing funding for RCTs, meet significant barriers to publishing in high-quality journals, and face publication costs that are often insurmountable.
in which genetic data from members of the Havasupai Tribe of Arizona was provided for diabetes research but continued to be unethically used for a wider range of studies without informed consent from the participants. In Canada, deplorable nutrition experiments done in residential schools exposed young children to chronic malnutrition, stunting, anaemia, and the risk of developing metabolic disorders such as obesity and type 2 diabetes.
Language
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Availability of language resources in trial handouts
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Use of trained health interpreters and translators during informed consent
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Availability of trained translators throughout the study recruitment, enrollment, and follow-up stages
Participatory community engagement
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Partnership with members and leaders from underrepresented communities during the planning and protocol writing stages
- •
Consideration of research techniques such as the Delphi Method to understand barriers and consider meaningful and value-based research practices, adverse effects, and health outcomes important to research participants
Participatory recruitment and enrollment
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Partnerships with community members and leaders to incorporate community-based recruitment strategies
- •
Development of a collaborative protocol with community members to identify representative percentage recruitment in trials
- •
Understanding of cost and cultural barriers for improvement of participant retention
Participatory leadership
Ethical consent
Ethical review, oversight, and inclusivity
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Inclusion of leaders and members with diverse experiences on institutional research ethics boards (REB)
- •
Ability of REBs to acknowledge and address concerns raised by community and public on ongoing studies
- •
Development of community-based REBs with inclusion of community-appointed members
Authorship
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Inclusion of community members, leaders, and scientists as protocol and manuscript authors based on collaboration by use of community participatory research techniques (ie, Delphi consensus, focus groups)
Knowledge translation
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Development of programmes, initiatives, information sources for better understanding of research results by communities
Data ownership
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Consideration of community data ownership practices (eg, the Canadian Ownership, Control, Access, and Possession statement by the First Nations Information Governance Centre)
Although diabetes treatment has come a long way in 100 years, we are overdue to develop and practice a framework for research that is both meaningful and representative of all patients. Ultimately, inclusivity is a matter of choice and prioritisation. Barriers and costs are not insurmountable in research; the first step requires the philosophy that all human beings deserve to benefit from fair and equitable research that represents them. We hope that the next 100 years will allow this philosophy to be enacted into practice.
SS identifies as a physician of visible minority. LR identifies as mixed Anishinaabe descent.
We declare no competing interests.
References
- 1.
Differential mortality and the excess burden of end-stage renal disease among First Nations people with diabetes mellitus: a competing-risks analysis.
CMAJ. 2014; 186: 103-109
- 2.
Diabetes in pregnancy among First Nations women in Alberta, Canada: a retrospective analysis.
BMC Pregnancy Childbirth. 2014; 14: 136
- 3.
Prevalence of diabetes by race and ethnicity in the United States, 2011–2016.
JAMA. 2019; 322: 2389-2398
- 4.
The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus.
N Engl J Med. 1993; 329: 977-986
- 5.
Effect of intensive blood-glucose control with metformin on complications in overweight patients with type 2 diabetes (UKPDS 34).
Lancet. 1998; 352: 854-865
- 6.
Is cardiovascular risk reduction therapy effective in South Asian, Chinese and other patients with diabetes? A population-based cohort study from Canada.
BMJ Open. 2017; 7e013808
- 7.
Assessing non-white ethnic participation in type 2 diabetes mellitus randomized clinical trials: a meta-analysis.
medRxiv. 2022; ()
- 8.
Clopidogrel with aspirin in acute minor stroke or transient ischemic attack.
N Engl J Med. 2013; 369: 11-19
- 9.
Clopidogrel and aspirin in acute ischemic stroke and high-risk TIA.
N Engl J Med. 2018; 379: 215-225
- 10.
A perspective on global access to insulin: a descriptive study of the market, trade flows and prices.
Diabet Med. 2019; 36: 726-733
- 11.
Genetic research among the Havasupai: a cautionary tale.
Virtual Mentor. 2011; 13: 113-117
- 12.
“Hunger was never absent”: how residential school diets shaped current patterns of diabetes among Indigenous peoples in Canada.
CMAJ. 2017; 189: E1043-E1045
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