From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses.
Marcy G AntonioTiffany Christine VeinotPublished in: Journal of the American Medical Informatics Association : JAMIA (2024)
We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.