The Challenge

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Newborn screening (NBS) is one of the most consequential public health programs in the United States. In Ohio alone, every baby born is tested for dozens of serious but treatable conditions such as metabolic disorders, genetic conditions, hearing loss, and critical congenital heart defects. The science behind these tests is sophisticated and well-funded. The experience of the families who receive results is not.

ODH and CCHMC identified a critical gap: while resources existed for clinicians managing NBS results, families navigating the system — often in the first days after birth, often without warning, had no reliable educational touchpoint designed with them in mind. Existing materials were underutilized, poorly timed, and not built around the emotional and cognitive reality of the NBS journey.

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The question was not simply "what information do families need?" It was deeper and harder: what does it actually feel like to go through this system, and what would genuinely help?

 

 

The Approach

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Rather than designing for families, this project was structured to design with them. The engagement began with qualitative research — 15 in-depth interviews with parents whose children had screened positive across a range of NBS conditions, including metabolic disorders, neurodegenerative conditions, sickle cell disease, congenital heart defects, and hearing loss.

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The interviews surfaced not just what happened to families, but how it felt, what they didn't know, what they wish they had known, and where the system failed them in ways that were avoidable. Themes were synthesized across all 15 interviews and organized by diagnostic category, revealing that the NBS experience is not a single journey — it is several, shaped by condition type, screening modality, communication quality, and access to specialty care.

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That research became the foundation for a four-session participatory design workshop series, bringing together a representative group of Ohio families to co-create a cumulative journey map and ultimately inform a product recommendation for NBS education.

 

 

Research Findings: What the Interviews Revealed

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Across 15 interviews, several consistent patterns emerged that reframed what the project needed to solve.

Families described newborn screening as life-saving, and often traumatic. These two things were not in conflict. Parents expressed deep gratitude for early detection while simultaneously describing the notification experience as one of the worst moments of their lives. The system was saving lives without adequately supporting the people inside them.

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The "no news is good news" assumption was nearly universal and consistently harmful. Most families left the hospital believing screening was complete. A follow-up call days later, often the first indication that something required attention, felt like a betrayal rather than a continuation of care. No one had told them results were still pending.

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Communication quality shaped the entire experience, sometimes more than the diagnosis itself. Parents described scripted, impersonal notification calls as deeply damaging. They described specialty center clinicians who took time and used plain language as transformative. The clinical content was often the same. The delivery was not.

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Education came too late and at the wrong time. Information about newborn screening was routinely delivered in hospital discharge paperwork — when parents were exhausted, overwhelmed, and unable to retain anything. Families consistently said they wanted to know about this before birth, not after.

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Parents became overnight experts and advocates without choosing to. Across diagnoses, families described being forced into care coordination, insurance navigation, and clinical self-education within days of a result — without support structures to help them do it.

A notable finding was the distinction between diagnostic categories. Hearing screening, for example, produced a unique distress pattern: low clinical risk, high false-positive rate, and deeply unclear communication about what a failed screen meant and what happened next. This illustrated that even routine, low-stakes screening can cause disproportionate harm when implementation is poorly designed.

 

 

The Workshop Series: Structure and Design

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The research informed a four-session workshop series designed around a single through-line artifact: a cumulative journey map that families co-create across all four sessions, growing in depth and complexity with each meeting.

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The series was structured to move families through a deliberate arc, from understanding the system, to mapping their experience, to identifying what is broken, to imagining what could be better. Design thinking was introduced not as a methodology to learn but as a frame for understanding why their expertise was the right expertise for this problem.

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Session 1 (May 16, 4 hours, virtual) established trust, provided functional literacy about the NBS process in Ohio, introduced journey mapping through a neutral analogy, and produced the first layer of the cumulative map, a shared timeline of moments across the NBS journey. The session was designed with careful attention to emotional safety, opening with community agreements and a clear frame that distinguished systemic analysis from personal storytelling.

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Session 2 (May 28, 1 hour, virtual) will add the emotion layer, asking families to mark where the system supported them and where it dropped them. Selectively surfaced research patterns, presented without attribution, will validate family experience without asking anyone to re-tell their story.

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Session 3 (June 11, 1 hour, virtual) will introduce How Might We reframing as a tool for shifting from problem description to possibility thinking. Families will react to and generate their own HMW questions, then prioritize the opportunity areas they care most about through a structured dot vote.

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Session 4 (June 25, 1 hour, virtual) will be the generative session, families will respond to 2–3 low-fidelity concepts developed from Session 3 priorities, and the cumulative journey map will be formally closed with each participant contributing a word that describes what the ideal system would feel like.

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Facilitation Design Decisions

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Several design decisions were made deliberately and are worth naming as craft choices.

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The journey map as a through-line artifact was chosen because it gives families something tangible that grows across sessions, evidence that their contribution is accumulating into something real. It also solves a practical problem: families who miss a session can re-enter through the artifact rather than through narrative catch-up.

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The decision to use a neutral analogy for introducing journey mapping, rather than starting with the NBS journey directly, was made to separate the cognitive work of learning a new tool from the emotional weight of applying it to a traumatic experience. Families needed to understand what a journey map was before they could build one safely.

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Research insights were translated into workshop content selectively and without attribution. Patterns from 15 interviews were surfaced as collective findings "things we heard across many families" rather than as data points or quoted material. This approach validates family experience, builds trust in the research foundation, and avoids the ethical risk of families recognizing their own stories in anonymized form.

The role boundary between the facilitator and ODH/CCHMC clinical partners was designed explicitly. Clinical partners hold content credibility and NBS expertise. The facilitator holds the process. These roles were kept visible and distinct throughout to prevent clinical authority from overriding family voice, a consistent risk in health system co-design work.

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What This Project Demonstrates

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This engagement sits at the intersection of several disciplines, qualitative research, trauma-informed facilitation, participatory design, and health systems thinking, and required holding all of them simultaneously.

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It demonstrates the ability to translate raw interview data into structured workshop content without losing the humanity of what was said. It demonstrates the design of multi-session participatory experiences for populations navigating significant emotional weight. And it demonstrates a conviction that the most effective solutions to complex system problems come from the people who have lived inside those systems, not despite their experience, but because of it.