Patient Engagement

The NCSCC aims to build centralized clearinghouse of multiple data streams. This clearinghouse will be a cornerstone for sustainability for the growing network and stakeholder engagement. This will capture and synergize critical data points of real world evidence (clinical, patient, and community) from the network.

We are looking at three real world evidence streams of data collection. We hope to use this as a sustainable effort for the clinic network:


Key Performance Indicators (KPIs) tracked in real time from clinical data located in electronic medical records of all participating clinic sites


A patient platform aimed at capturing the patient voice and patient valued outcomes


Community Based Partners (CBO) stakeholder engagement data

We hope to use this as a sustainable effort for the clinic network.

  • Clinical (KPIs) and state administrative surveillance data to show cost reduction and improved patient outcomes for institutional, insurer, and state support
  • Data to support patients informing future research for sickle cell product and drug innovation
  • “Forward facing” data portal with access tiers for all stakeholders to engage with structured data
  • Transparency for patients to see their data
  • Tracking patients’ valued outcomes to inform clinical innovation and drug innovation