1. A researcher within the health system receives an alert that a patient met the criteria for a clinical study, and the patient agrees to participate after going through the informed consent process with the patient navigator. Pertinent historical patient data are accessed for the study. |
1. Access to patients and their clinical data to support research is rarely well integrated into clinical care. |
2. When the patient is later admitted to the emergency department for a condition that disqualifies him from the study, the emergency department physician and study coordinator communicate about the case and the patient is removed from the study. |
2. Patients typically lack the ability to learn about and decide how they want their data to support research and then execute on those decisions in a scalable way. |
3. The patient is directed to a new health system–approved app that helps him track and report key health data intended to improve congestive heart failure management. The app not only provides data to the patient’s care team, but is also connected to a knowledge cloud that delivers personalized analytics and enables him to donate it for research as part of the Precision Medicine Initiative Participant Technologies Center.38
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3. The health app environment is immature, with few safeguards for safety and effectiveness and limited integration of apps into clinical care or research. |