She spends significant time coordinating her care, shuttling information between her providers. She spends too much time dealing with her insurance company. She spends a small fortune on out-of-pocket medical expenses.
Mary consented to participate in studies at a major teaching hospital but has no idea how her data or lab samples are being used, which companies are benefiting and whether the studies ultimately led to meaningful interventions.
System Problem #3: Mostly Alone
No advocate to fully curate and present complex data in a digestible format, flagging problems before they become serious medical issues. Patients do not know how their health data is being used nor how valuable it is.