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Policy

Health policies have a profound impact on healthcare accessibility and whether health-related social needs are addressed to advance health equity, whether at an institutional, local, state, or federal level. The Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion brings an innovative perspective to examine how policy relates explicitly to pediatric health equity. The Fenwick Institute brings together clinicians, researchers, policymakers, and public health professionals to advocate for policy changes that increase access to pediatric healthcare.

Lived Experience in Health Care and Health Systems Research Handbook

Fenwick Institute researchers collaborated with the Children and Youth with Special Health Care Needs National Research Network as authors and reviewers of the handbook, Lived Experience in Health Care and Health Systems Research. In a chapter addressing gaps in inclusion of diverse patient populations, they call on researchers to apply the principles of health equity, diversity, and inclusion throughout the research process. The chapter outlines steps researchers can take to identify opportunities and increase the diversity of research participants. These include:

  1. Ensuring respectful interactions when approaching families traditionally underrepresented in research.
  2. Supporting diversity in research with infrastructure and resources.
  3. Aligning systems and policies to ensure equity in the engagement and enrollment of diverse participants.

Please obtain your free copy of the Lived Experience in Health Care and Health Systems Research Handbook for which the Fenwick Institute wrote the chapter on Engaging, Recruiting, and Retaining Diverse, Underrepresented, and/or Underserved Children with Special Health Care Needs in Clinical Research.

Approach to policy

Addressing health disparities requires wide-ranging and innovative strategies. Health policy is an essential tool to enact change on a broad level and reduce health disparities across populations. While research influences health care practices and policies, many populations have been historically underrepresented in research. For these reasons, the Fenwick Institute, through its public policy focus, aims to produce meaningful changes using evidence-based strategies to improve the diversity of participants in pediatric research and promote policies focused on pediatric health equity.

  1. Promote and disseminate leading research related to health policy and health equity.
  2. Build a community of pediatric health equity researchers and policy experts.
  3. Foster collaborative work to advance pediatric health equity and inclusion.
  4. Serve as a change-maker in pediatrics to advance health policy and improve health equity.
  5. Translate research findings into policy recommendations to produce meaningful changes.

Policy initiatives

Fenwick Institute Pediatric Health Equity and Policy Research Symposium

The annual Fenwick Institute’s Pediatric Health Equity and Policy Research Symposium is one of the first national and international initiatives to bring together leaders and researchers in pediatric health equity and policy. Despite a clear need and desire to build a community of pediatric health equity and policy researchers, there was previously no meeting or conference dedicated solely to research related to pediatric health equity and policy. The symposium provides a one-of-a-kind forum for this type of discourse.

The goals of the annual Fenwick Institute’s Pediatric Health Equity and Policy Research Symposium are to:

  1. Promote leading research related to pediatric health equity and policy
  2. Build a community of pediatric health equity researchers and policy experts.
  3. Foster collaborative work to advance pediatric health equity and inclusion.

In the symposium’s first year, presentations focused on original research. In its second year, the symposium built on that success with workshops on relevant research methodology and how to translate research into advocacy for policy change.

A man stands at a podium in front of an audience at the first Fenwick Institute symposium.

Register now

The next annual Fenwick Institute's Pediatric Health Equity Research and Policy Research Symposium is scheduled for September 12-13, 2024 at Boston Children’s Hospital.

Diversity in therapeutics development

As an invited member of the planning group for the Fall 2024 Federal Drug Administration (FDA) Diversity Public Workshop on Enhancing Diversity in Therapeutics Development for Pediatric Patients, Dr. Lois Lee will bring her expertise in research to help build health equity into the design of clinical trials. This workshop, a collaboration between the FDA and the University of Maryland Center for Excellence in Regulatory Science and Innovation (MCERSI), will be focused on increasing the enrollment of historically underrepresented populations in pediatric clinical studies so that clinical research reflects the populations affected by the disease or condition studied.

Reporting and representation of participant race and ethnicity in National Institutes of Health–funded pediatric clinical trials

Enrolling racially and ethnically diverse pediatric research participants is critical to ensuring equitable access to health advances and generalizability of research findings. A team of Fenwick Institute researchers assessed the representation of pediatric participants from different racial and ethnic groups in NIH–funded pediatric clinical trials. Their cross-sectional study, published in JAMA Network Open, found that overall, enrollment of pediatric trial participants was racially and ethnically diverse, with overrepresentation of racial and ethnic minority groups when compared to the US population. As NIH has published specific guidelines for the enrollment of diverse populations in trials, these policies have been effective in pediatric trials. It will be important to examine the diversity of participants in trials funded and sponsored by other researching entities.