Research News

Children with high-risk neuroblastoma had worse outcomes if they were from certain racial/ethnic groups or were on public rather than private insurance, despite being treated in clinical trials with standardized protocols, according to a study led by investigators from Dana-Farber/Boston Children's Cancer and Blood Disorders Center.

The study shows that young patients from historically marginalized populations or from lower-income backgrounds had poorer five-year survival rates even when they were assigned to receive uniform initial treatment after diagnosis with high-risk neuroblastoma.

"These findings recapitulate what we have known for decades at the population level-;children from historically marginalized groups are less likely to survive their cancer. They add an essential next layer to our understanding of racial and ethnic disparities in childhood cancer, and that is that enrollment on clinical trials is not enough to achieve racial and ethnic equity in survival."

Puja J. Umaretiya, MD, a clinical fellow in pediatric hematology/oncology at Dana-Farber/Boston Children's

In an interesting interview for Global Health Now (GHN), Carel IJsselmuiden and James Lavery share their view on "how the RFI speaks to the need for organizations to reflect and take stock of any shortcomings". The RFI isn’t a report card that brands institutions as good or bad. It’s intended, instead, to provide a pathway to self-improvement—which is the essence of decolonization.

(Ref: Joanne Silberner for Global Health NOW)

Find out if you're a Colonizer or Decolonizer

Free ethics training for students in health research ethics!

The 12-hour virtual training is very interactive and features more than 20 experts in bioethics from the APRU network. This year it will take place on April 14/15, April 28/29, and May 13/14.

Space is limited and the deadline to register is April 10, 2022.

REGISTER NOW!

Abstract

Background: Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to ‘work’, and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped.

Methods: To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature, we conducted a realist review of CE with malaria research – a theory driven approach to evidence synthesis.

Results: We found that community engagement relies on the development of provisional ‘working relationships’ across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing ‘dominant health research paradigm context’, such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research.