Data rests at the heart of health IT’s capacity to help improve care quality and health outcomes: standards-based, interoperable electronic systems make it possible to access, share, use and re-use information that was once locked in paper charts kept by individual providers. As more and more consumers engage and adopt mobile health technologies to help them better track their daily health and wellbeing, it will be increasingly important to consider how those data can flow seamlessly from consumers to providers – and back – to help everyone achieve better health.

Recently, ONC reconnected with a patient and patient-advocate, Donna Cryer. Donna is a liver transplant survivor and health IT advocate using technology to help her better manage her health but also foster more useful collaboration with care team members to improve her health and quality of life.

Her Challenge

Since the first successful liver transplant in 1967, more than 100,000 patients have experienced this life-saving procedure that combines a generous organ donation, an intricate surgical technique, and medication that tricks the body into not rejecting the new organ. As liver transplant patient and graft (organ) survivals have increased, surpassing 80 percent at the first year, so has the need for information for patients and clinical teams about long-term management.

Donna Cryer, liver transplant survivor and health IT advocate

However, there is great deal of variation in the care of transplant patients at the center, practice, and provider level, particularly after the crucial first year post- transplant, when many patients return to their home communities and primary care. This transition period is when patients need even stronger care coordination with their care team especially as patients’ care needs become more complex with age and time.

Donna underwent the procedure twenty years ago and has worked to manage her care with multiple specialists she has seen across four states and more than a dozen hospitals, outpatient clinics, and community practices using a variety of tools, including a patient portal and wearables. Her experience highlights three key areas that stand out as opportunities to use data to make sure that patients have the best chance possible to make the most of this gift of life: transitions of care, coordinated care and personalized care.

Donna has had sixteen hospital admissions and discharges and has had to transfer her entire network of care from Connecticut, where she grew up, to Massachusetts where she went to college, to Maryland where she received the transplant and now to Washington, D.C. where she lives.

Like many patients with complex conditions, as a liver transplant recipient Donna still sees many physicians – including internal medicine/primary care, transplant hepatology, gastroenterology, nephrology, dermatology, orthopaedics, as well as obstetrician/gynecologists, dental and ophthalmology – some in the same academic medical center and others in community practice.

Her experiences in the past twenty years show the importance of the portability of her personal data and the ability of her various providers’ EHRs to let her view, download, and transmit critical information to her …read more