Innovation in Action

Community Leadership Council

Empowering parents and communities as partners with scientists and clinicians

Community leaders have been full partners in our pediatric work from 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, and to vigilance in preventing potential negative uses of new measures of stress effects in 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, whether the use of new measures is ultimately beneficial for children and their parents will depend on the extent to which 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 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.

What Are the Community Leaders Doing?

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.

Plans are currently being developed for the community leaders to collaborate with selected Pediatric Innovation Cluster sites to co-create and pilot an action agenda for parents to partner with pediatricians to:

  • improve community-wide understanding of the impact of adversity on the developing brain and other biological systems;
  • realize the promise of new measures to better address young children’s needs; and
  • mobilize community resources to reduce local sources of stress in families’ lives.

“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, The Primary School, East Palo Alto, CA

Pediatric Innovation Initiative Community Leaders

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

Byron D. Amos
CEO of Capacity Builders, Inc., Atlanta, GA

Cerella Craig
Community Leader and Parent, New Haven, CT

Alise Hegle-Morrissey
Advocacy Lead, Children’s Home Society of Washington, Seattle, WA

Nora Razón
Family and Community Engagement Manager, The Primary School, East Palo Alto, CA

Wayne Ysaguirre
Former President and CEO, Nurtury, Boston, MA

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