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 care team. She says that this was “essential to ensuring that my entire record and medical history are available to my new physicians.”

“All my physicians need to be able to communicate with each other and with me about my care, and to share my complete medical record. Interacting with these physicians generates data from dozens of visits, images, lab tests, and procedure reports that need to be reviewed, evaluated, and acted on in a timely fashion. Widespread use of a truly interoperable electronic health record system with real-time alerts and analytics as well as a patient portal designed with patients and for patients would increase the likelihood that troubling trends can be addressed before they become serious illnesses and expensive hospital stays,” Donna says.

There is a rich body of literature from clinical trials and many medical society guidelines about transplantation and the benefits of engagement and involvement by patients. Distilling this information down to care for an individual patient is often as much art as science. It requires both patients and providers to listen and learn and it is much more than just applying algorithms that automatically produce a care plan.

“One of the major advances in recent years is the availability of wearable and wireless devices and mobile applications to record and visualize the information about the vast majority of my life spent outside the doctors’ offices,” Donna says. “Using these tools – a wireless scale and bracelet-style activity tracker – my doctors and I have been able to assess intervention effectiveness, adjust dosages, unearth side effects, and clarify decision points.”

One example: After years of prednisone, autoimmune disease, and impact from dance, tennis, and hiking, Donna and her orthopedist decided to try a cortisone injection in an attempt to forestall knee replacement surgery. Patients respond differently to these injections. Some see no effect, others can see six months or more of improved mobility.

“Two weeks after the injection, I was able to use my activity tracker to see that my number of steps tripled from 3,000 steps perday to 9, 000 steps perday, showing that it had had a clear beneficial effect. Based on this success, my doctor and I decided that we would consider options for the next intervention when my average number of steps fell below 4,000 steps again. Without the objective measure provided by my activity tracker, we would be basing our decision on my subjective assessments of getting worse and my knee being as bad as it was before. By putting my data to work for me, we can now do better,” Cryer explains.