Designing the Next Population Health Registry

The Opportunity

Registries are a familiar tool to physicians, often used to gauge past performance to improve future patient care. But what if registries could anticipate patient needs and proactively apply evidence-based care before a patient falls ill?  ​Genesis worked with a large children’s health system to develop an approach that addresses the primary and predictive determinants of health for children with sickle cell disease, improves health outcomes and quality of life, and lowers the total cost of care.

Approach

Genesis facilitated a design process with a multidisciplinary team of primary care practitioners (PCPs), emergency room physicians, specialists, educators, and pharmacists; identifying primary and predictive factors impacting outcomes for children with sickle cell disease. In collaboration with clinicians and information technology specialists, Genesis co-created a population-based registry within the electronic health record to enable proactive care planning, including appropriate immunizations, medication management, and scheduling follow-up care and primary care referrals for patients treated in the emergency department.

Outcomes

The registry now effectively manages the health needs of nearly 85% of children with sickle cell disease in the state. The health system documented improvements in post-ED follow-up for pain crises, readmission rates, and patient access to pain medication.

Key Design Element

In addition to creation of the patient registry, Genesis worked with local pharmacies to ensure 24-hour availability of oral solution pain medications for young children with pain crisis, since lack of access to this therapy was identified as a key contributor to readmission. By facilitating “upstream” interventions like the timely delivery of critical condition management drugs, the registry is able to reduce “downstream” crises, such as the use of emergency department services.