Problems With the Problem List: Challenges of Transparency in an Era of Patient Curation

J Am Med Inform Assoc. 2020 Jun 1;27(6):981-984. doi: 10.1093/jamia/ocaa040.


In recent years, the OpenNotes movement and other changes in healthcare have driven institutions to make medical records increasingly transparent. As patients have begun to question and request changes to their Problem Lists, clinicians have come to face the ever more frequent challenge of discerning which changes to make and which to refuse. Now clinicians and patients together choose the list of problems that represent the patient's current state of health and illness. As the physician's role slides closer to consultant and the medical paternalism of the twentieth century falls further into the background of our technology-infused present, who holds the power of delineating a patient's clinical identity? This paper examines the ethical and practical dimensions of this question and proposes a research agenda that aims to answer it. Such explorations are essential to ensuring that the physician remains relevant to patient's notions of health, illness, intervention, and healing.

Keywords: OpenNotes; ethics; patient autonomy; problem list; shared decision-making; transparency.