1) How do individual physicians contribute to health care disparities? Thinking about an area of health care of particular interest to you, what research do you think could be done to either understand the effect of individual physicians on health disparities, or to decrease this effect?
Within the field of pediatric oncology, physicians and practitioners certainly contribute to health care disparities in the process of enrolling patients for phase I clinical trials. Because this process is contingent on the practitioner offering participation in the trial (on the basis of whether they think the patient stands to benefit, whether they believe they will be compliant with necessary studies and procedures for the study, etc). Obviously poverty, lack of transportation, lack of proficiency or familiarity with English or the medical system pose challenges to complying with these kinds of studies, and with clinical trials more broadly. Phase I clinical trials often are the only way for pediatric patients with rare or aggressive disease (or both) to access potentially life- saving treatments. Furthermore, if these drugs are not tested on a diverse group of patients, they are less likely to benefit these patients. These disparities what has been described in the oncology literature more broadly about disparities in clinical trial enrollment. Even a descriptive study describing the racial, socioeconomic, and parental education status of enrollees in pediatric phase 1 clinical trials would be useful to describe the problem, and educate providers about this issue.
2) Structural issues within health care delivery are implicated in health care disparities. Please brainstorm 4 structural issues that might contribute to these disparities. Which of these are relevant to your particular area of research, and how?
There are a myriad of structural issues that can contribute to health care disparities. Some that affect my patients significantly are: English language proficiency, poverty, immigration status, and health literacy.
When considering enrolling a patient on a phase 1 clinical trial, using an interpreter only goes so far when conveying information. The interpretation adds extra time to visits that are already burdensome and time consuming for families. Individuals often report that the interpretation can be confusing, particularly for issues as complex as consent, the purpose of a phase 1 study, etc. When patients experience symptoms they are instructed to report them to their team, which adds an extra layer of work when they are obligated to go through an interpreter.
Poverty affects patients’ access to care in this context, as parents are often required to miss many days of work in the course of their child’s illness. If they have unstable employment/ housing/ transportation, missing days of work to care for their ill child can form an untenable barrier.
Similarly, undocumented individuals report a great deal of stress regarding their legal status, and being deported during their child’s critical illness. Concerns about being “discovered” by way of participating in clinical trials has made families opt out of participation. This has the potential of doing the patient and the research community a disservice.