SYNOPSIS
Always was born in response to the question – How might we foster healthy communication between patients with chronic illness, their family members, and medical experts to improve treatment and traditional caregiving methods?
When we, or those we love, face serious illness, we must make numerous personal and medical decisions that can be frightening, difficult, and confusing. Individuals who have meaningful conversations with their clinicians about their values, goals, and wishes are more likely to feel less distress and report better quality of life. A compassionate and transparent conversation is the key to easing confusion and fear and ensuring that healthcare decisions reflect what matters most to patients. However, only one-third of patients in their last year of life report having these conversations, and often, they happen too late in the course of illness to fulfill their most essential wishes. Even though clinicians agree that these conversations matter, 71 percent still need a system to routinely ask about patient goals, as per findings at Ariadne Labs health systems innovation at Brigham and Women's Hospital and the Harvard T.H. Chan School of Public Health. Furthermore, palliative care is often associated with end-of-life care, which may be delayed until a patient's condition is terminal. This means that patients may miss out on the benefits of palliative care that could have improved their quality of life earlier.
Building off on the research by the Ariadne Labs and with the guidance of their palliative care team, Always has been designed as a communication system-design for chronic illness, proposed to run parallel with the patient's journey, from diagnosis to end-of-life care. Always incorporates a set of take-home surveys designed to be taken by a patient at every stage of their journey with the illness as a
reflective exercise that helps medical staff respond effectively and aids their family members in providing informed care. The gathered data is collected in a digital archive and utilized to smooth the transition for new patients as they move into their next stage of treatment through interactive installations in healthcare facilities.
reflective exercise that helps medical staff respond effectively and aids their family members in providing informed care. The gathered data is collected in a digital archive and utilized to smooth the transition for new patients as they move into their next stage of treatment through interactive installations in healthcare facilities.
Collaborators
Hiteshree Das
Connie Hui
Zhishen Chen