Bringing equity to life equity research – Boston Children’s Answers

A growing body of research examines child health equity, diversity and inclusion (EDI). But if not done right, health equity research can be damaging, perpetuating biases and misconceptions that actually exacerbate injustice.

To guide EDI-related studies, the Institutional Review Board (IRB) at Boston Children’s Hospital (via Tina Young Poussaint, MD, and Susan Kornetsky, MPH) asked the hospital’s Office of Health Equity and Inclusion developing an evaluation process. In 2022, a team led by Snehal Shah, MD, MPH, Sabra Katz-Wise, PhD, and Valerie Ward, MD, MPH, began an EDI research evaluation process in collaboration with the Boston Children’s Center. Sandra L. Fenwick for Children’s Health Equity. and Introduction.

This led to the creation of the EDI Research Review Committee. This group includes health equity experts, health equity research, community-based research, medically underserved and underserved research, research of health services, data analysis, and legal expertise.

Over a 20-month period, the committee reviewed 78 EDI-related study methods and went on to develop a standardized EDI evaluation method, which was published recently. Pediatricians.

Examining planned research through an equity lens

The committee considered all stages of each proposed study, from design to dissemination of results. Before each survey, it asked research groups to think about questions related to EDI such as: “What are the main ideas or opinions about the selected people that you might bring to this research project?”

Research teams were also asked to submit a form that answered other questions related to EDI such as:

• How do you plan to engage patients, study participants, and/or the public?
• What patient-related barriers and/or health system barriers might there be to recruitment or participation in your project, and how do you plan to address these barriers?
• What is your plan to disseminate your findings to patients, study participants, and/or the public?

The committee then discussed each project. For protocols that included primary data collection, the committee provided the research team with constructive feedback and suggestions about the study process, both verbally and in writing outlining the committee’s recommendations and requirements.

Incorporating EDI principles into research

Of the 78 protocols, 11 have already included health equity principles and were adopted without recommendations. Another 67 adopted recommendations to ensure the application of health equity principles. These included:

Appreciate the structural and social determinants of health in questions and lesson plans.

Without considering structural and social factors that may cause inequity, researchers may mistakenly attribute health disparities to biology. Or they may reach conclusions that seem to blame patients for their health outcomes.

Housing insecurity is another example of a public health need. “A child with asthma may have many emergency department visits, for example, not because he is not taking his medication, or because his mother has not brought him in for a check-up, but because he lived in a house with mold that could cause his asthma,” says Shah.

Difficulties accessing care – including transportation, child care, and insurance coverage – can also drive disparities in clinical outcomes.

Bring the public voice to the investigation.

Members of the group, society, or community being studied should participate in the design, interpretation, and dissemination of findings. Committee reviewers often advised researchers to get input from Community Advisory Boards and patient/family groups. As the saying goes, “There is nothing about us without us.”

Ideally, some of the staff who enroll or interact with study participants should be part of the study group. This can increase participant comfort, build trust, and provide a powerful learning experience. In some cases, community members can be co-authors of a published paper, says Katz-Wise.

Use language that is consistent with current health standards.

Using outdated terms that offend participants can discourage them from participating in health equity research and can affect how the research is interpreted. Such language can also be inaccurate, imprecise, and stigmatizing to academic, social, or community participants.

Develop an analysis plan to handle missing data on EDI forms.

Missing sociodemographic data (particularly race and ethnicity data) was a concern in a third of the protocols the committee reviewed. The data analysis of the study should account for this. In order to obtain an adequate sample size, the review committee often provided guidance on recruiting a different population.

A road map for academic medical institutions

In general, the researchers accepted the recommendations of the EDI Research Review Committee. Others have expressed confusion about the added part of the review. However, many saw the benefit of participating in this process.

Shah, Katz-Wise, and their colleagues recommend getting buy-in from hospital leadership before developing an EDI survey. “It has to be a priority for the agency,” says Katz-Wise. “Committee members need protected time to conduct evaluations.” They also advise communicating with researchers in advance of the evaluation process. EDI so they can plan ahead.

The authors also recommend that review committees include diverse perspectives, including those of people from underrepresented groups in biomedical research.

“Inputs from health equity and EDI experts help the IRB consider the risks and benefits of research and how the principle of justice applies to each protocol,” says Kornetsky. , senior director of Clinical Research Compliance at Boston Children’s. “Many other IRBs look to this review process as a model for consideration in their institutions. “

The work of the Boston Children’s EDI Research Review Committee has been dynamic, continuing over time. “The more we do this work, the more we learn,” says Shah.

Learn more about the Office of Health Equity and Inclusion and The Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion.