Innovation in Action

Community and Parent Leadership Council

Centering community voice in the development and testing of the JPB-Battery

Community leaders have been full partners in our pediatric work since the creation of the JPB Network in 2015. Community co-ownership reflects a deep commitment to diversity, equity, and inclusion as core values of the Pediatric Innovation Initiative. It is also a reflection of our vigilant attention to both maximizing parent empowerment and preventing potential negative uses of new measures of stress effects in young children (such as inappropriate labeling of children or families), particularly in communities of color, where racism and other forms of discrimination have led to egregious misuse of biological information in the past. In short, the extent to which the use of new measures is ultimately beneficial for children and their parents will depend on how the development process itself is shaped collaboratively by community leaders, clinicians, and parents rather than driven by scientists alone.

What Is the Role of the Community and Parent Leadership Council?

Members of the initial group were selected from a larger national convening of community leaders because they bring both a deep interest in the Initiative’s objectives and serious concerns about the potential misuse of biological information, especially for children of color or other marginalized groups. They are leaders in their own communities, represent a range of experiences, perspectives, and contexts, and contribute critical expertise to the mission of the Initiative. Through their deep understanding of neighborhood-level assets and structural challenges, they help ensure that advances in science, practice, and measurement will be used responsibly to empower parents and communities to promote the healthy development of young children.

Active engagement of community leaders in the measurement development process has highlighted the potential power of mobilizing communities as agents of change for broader programmatic and structural shifts that address underlying drivers of adversity and inequity. The empowering potential of scientifically grounded information that is co-owned is particularly important for building trust between clinicians and parents in a way that honors family strengths, avoids deficit thinking, and promotes shared decision-making as essential elements in the relational dimension of pediatric practice.

“As I learn more about the possible measures that will come out of the work that scientists are leading, I am more and more appreciative of being at the table. To be able to discuss with others how families may perceive, react to or be unintentionally harmed by what we hope will benefit them is incredibly important if we wish to truly partner with families on what happens after we and they learn more about any biological evidence/markers found in their children.”

—Nora Razón, Director, San Mateo Small Business Development Center (SBDC), San Francisco, CA

Pediatric Innovation Initiative Community and Parent Leadership Council Members

Javier Aceves, M.D.
Former Medical Director, Young Children’s Health Center, Albuquerque, NM

Byron D. Amos
Chief Executive Officer of Capacity Builders, Inc., Atlanta City Councilman, District 3, Atlanta, GA

Nora Razón
Director, San Mateo Small Business Development Center (SBDC), San Francisco, CA

Wayne Ysaguirre
Chief of Workforce Innovation, The CAYL Institute, Roxbury, MA

Jheanell Daye, M.Ed., MBA
Community Member, Easton, MA

Talethia Edwards
CEO, TOEdwards & Associates Community Development Firm, Tallahassee, FL

Janic Maysonett, MBA
Family Community Partnership Manager, LULAC Head Start Inc, New Haven, CT

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