Empowering patients and providers to partner for best care
When their child developed flu symptoms in 5th grade, her family had no idea that she would slowly lose the ability to read and attend school, and they were starting a ten-year journey back to full health. After experiencing the challenges of being a caregiver for a child with complex chronic conditions, this mother changed careers from satellite engineering to health care research. Her mother did this in order to research and develop patient-facing health care tools and strategies to help other patients and their caregivers manage their chronic conditions, as well as, become active partners with their care teams. This presentation includes insights into managing chronic conditions, tangible strategies and solutions used to support recovery, and the results of the patient empowerment research that was inspired by this family’s experience. Patient and caregiver engagement has become a central part of the health care system, but strategies to enable this type of engagement are often limited to the clinical setting. Health care and health IT have made significant progress in developing capabilities to support clinicians, but there remains a gap in patient-facing capabilities to support patients and caregivers in their daily care between appointments and to enable patients to bring their voice into the clinical setting. As a caregiver and patient empowerment researcher, this presenter will share the methods used to gather a complete set of longitudinal data to tell her daughter’s story that supported their providers in their diagnostic and treatment decisions, and will share research that demonstrates how improved patient/family engagement, and effective application of technology enablers, can drive positive outcomes. To identify how patients and caregivers can be engaged more effectively, this research included a review of activities common to chronic patients beyond the clinical setting, the development of process models capturing a patient’s daily activities and interactions with their care team, and the development of a prototype to demonstrate the ability to collect patient-generated data between appointments to support patients, caregivers and clinicians with awareness and decision-making. In collaboration with Carnegie Mellon, provider interviews were conducted to confirm the clinical value of “active” patient-generated data gathered between appointments. In collaboration with the University of Virginia, a clinical study was conducted to evaluate if patient-generated longitudinal symptom data could be reliably collected beyond the clinical setting. Working with patients and providers in rural Montana, this research identified how these capabilities can be integrated into existing care and payment models, and evaluated the impact of these tools on health outcomes. In summary, the presenter will share their experience and the results of this research to empower providers, patients and caregivers to partner more effectively and improve health outcomes.