I often get asked how I developed the standard symptom list on DotFriday. The answer is simple and complicated: research. The list of pre-populated symptoms came from other lists of the most common symptoms for people with chronic disease, as well as from interviews with health care providers and patients. The list is organized generally by organ system, meaning, for example, that all of the GI symptoms are listed together.
But as I spoke to people with various chronic diseases I realized that how people describe their symptoms is personal and depends on the individual. A person with chronic lung disease may have several words to describe what others would call a cough. Stomach pain can be described in a wide variety of ways, included the location, type and degree. So, we developed the “custom symptom”. DotFriday users can add and name their own symptoms. When users report these symptoms to doctors and nurses they may have to explain the nuance of each symptom, but often this can lead to a meaningful conversation about the direction of the symptoms over time. And then each user, together with his or her health care team, can use this rich data to assess whether treatment plans should change.