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American Academy of Pediatrics 

CLIENT STORY

Building a national pediatric data registry to improve children’s health

Pediatricians focus on working with families to help children with healthy growth and development, receive all needed vaccinations, and heal from common injuries and health conditions. However, when pediatricians confront atypical cases, it can be difficult to identify an appropriate care model due to a lack of comparable data. To date, clinical data registries have been focused on rare diseases or sub-specialties – not pediatric primary care. We collaborated with the American Academy of Pediatrics (AAP) to create the foundation for developing a national registry of pediatric data that could transform healthcare for the nation’s infants, children, adolescents and young adults.  

Key successes

  • Developed and validated a business case, plan and technology for a first-of-its-kind registry

  • Designed an iterative approach to build robust, highly usable data, reducing risk

  • Created a sustainable business plan through appropriate monetization of data to improve child healthcare

Improving pediatric care for all children

The US is a world leader when it comes to business, innovation and the economy. However, when it comes to children's healthcare and wellbeing, the country faces challenges. These include an unexpectedly high infant mortality, high rates of child obesity and children who lack health insurance or a primary doctor.

As the leading US pediatric healthcare organization, the AAP committed to build the CHILD Registry, a first-of-its-kind national registry that would enable pediatricians and others who care for children to use data to improve child health and wellbeing. To date, most quality measures, such as the Healthcare Effectiveness Data and Information Set (HEDIS), have been based on adult data, meaning that many are not relevant to children's care.

With longitudinal data on millions of children, the CHILD Registry will help the AAP define quality care collaboratively with the federal government, hospitals and insurers based on relevant data. This will enable them to provide benchmark data, which pediatricians can use to drive outcomes. The registry also will help pediatricians standardize insurance reporting, and enable pharmaceutical and biotech organizations to develop therapies faster by leveraging data to connect patients with trials that could help them.

Building a first-of-its-kind registry

The CHILD Registry is a complex project for the AAP to undertake. For example, the association will need to convince thousands of pediatricians to securely share their data on their patients, a process which takes considerable time and effort. To deal with the scale of the challenge, the AAP needed a way to create the database iteratively, as well as finance its costs.

Getting unanimous board approval for the plan

Over the course of two years, we worked with the AAP to develop their concept for a registry, create and validate a business plan and roadmap, develop an operating model, identify the right scalable technology, review and shortlist vendors, and strategize staffing. We worked to align stakeholders around a common vision and provided a practical business case, backed by industry data, that gave AAP leaders confidence that the registry could be built and that the cost estimates were clear and realistic.

We also developed an innovative strategy to commercialize registry data, sharing costs and revenue with the vendor. Revenue opportunities included charging participants modest fees and commercializing the data with pharmaceutical and biotech organizations. We also advised on establishing a research and policy governance structure to monitor data commercialization efforts and using data to drive grant and proposal development, among other opportunities.

We recommended that AAP develop a basic, extensible registry; enable automated collection of data via electronic health records; and use artificial intelligence and natural language processing to capture and incorporate external unstructured data. The database will be piloted with large organizations and built in a secure, agile, iterative manner over five years. Through our extensive negotiations with the technology vendor, the AAP will save $700,000 over five years and obtain additional revenue by $1.1 million over the same timeframe.

We helped AAP evolve the CHILD Registry from an abstract concept into a concrete plan with manageable, sequenced steps that received unanimous approval from the Academy's board of directors.

"We're excited to build a registry that will be an important part of our membership value proposition and ultimately provide a 360-degree view on children's health and development needs and the best way to provide the care," said Anne Edwards, MD, FAAP, Chief Population Health Officer for the AAP.

The CHILD Registry will go live in early 2021, with two to three pilot sites at large hospitals and medical centers. It is anticipated to grow to 10-15 sites by the end of 2021. In 2022, the registry will be poised for rapid growth.

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Nilesh Chandra

PA healthcare expert
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