In conversations with researchers we have discovered that the primary issue many of them face is a lack of data. HLHS is rare, only affecting 1 in 14,000 children. The average children's hospital in a large city might see 2 to 3 dozen children with HLHS in a year. Small hospitals might see only 1 or 2. Due to HIPAA laws and the resources needed to sanitize data to share between hospitals and research institutions, most do not share data. Therefore the average researcher has, at best, access to only 30-40 medial records in a year. To do effective research, they need more data.
Currently, patient data are stored in jumbled and disconnected databases. "Each child has records from their birth hospital, surgical hospital(s), post-surgery treatments, pediatrician, cardiologist, pulmonologist, dietitian, physical therapist, and many other sources scattered in a variety of real-world locations and computer databases, and each institution is reluctant to share their data with any other.
Project Heart Source aims to change that situation. What we want is patient data, owned by the patients, kept in an easily accessible, easily shared, and easily compared place. A safe place that parents and patients can trust with their medical records. A place from which patients can easily share their data with researchers. A place with enough data to make research efforts worthwhile.
Heart-Link is a smartphone and web application that works with the parents and patients directly to collect data in an unobtrusive and easy to use format. The data collected, with the permission of the parents and patients, will form the backbone of the Heart Source database, and provide parents and patients an easy way to record, track, and manage their data.