For the One Who Carries the Story

From Conversation to Chart: What Gets Lost Along the Way

In many families, one person seems to carry the medical history for everyone. They remember the dates of surgeries, who broke which bone, when symptoms first appeared, and how long it took to get a diagnosis. They may not have everything written down, but they know the story because they have told it so many times.

Every time the family meets a new doctor, that person tells the story again. They explain what happened, when it happened, and what has changed since the last appointment. It can take a lot of time, especially when the patient's daily life has become more complicated.

This month at Qualitative Intelligence Systems, we wanted to understand how much of that story makes it into the medical record. With permission from the nurse and doctor, a family used our note taker during a full medical appointment.

After the visit, the family received a message that the doctor's note was available in the patient portal. We compared the note with the recording of the appointment, and the difference between the two was surprising.

For the One Who Carries the Story
The record kept one fact in five.
It credited none of them to the person who said it.

Almost 35 minutes of the visit focused on the patient's daily life. The patient and family talked about what he could still do, what had become more difficult, and when he needed help from someone else. Much of that information did not appear in the chart.

The chart also did not make it clear who had shared each piece of information. Some details came from the patient, while others came from a caregiver or family member who had noticed changes at home. That difference matters because each person may see something the others do not.

The doctor had listened carefully throughout the appointment. He asked thoughtful questions and showed real interest in what the patient and family were experiencing. The problem was not the conversation or the care. The medical record simply was not designed to capture the full story of what was shared.

When those details are missing, the family has to carry them forward.

At the next appointment, they may need to explain everything again because the information about daily life, independence, and caregiving never made it into the chart.

Qualitative Intelligence Systems is built to give that information a better home. We help patients and caregivers save what they are seeing, organize it over time, and bring it forward so that important details do not disappear after each visit.

How many times have you had to tell your story?

About the Authors

Marc is the Founder of QIS, Qualitative Intelligence Systems. He brings decades of experience in technology, systems thinking, qualitative research, and applied sociology to the challenge of helping institutions better understand the people they were built to serve.

Jennifer is a communications and patient engagement consultant serving the pulmonary fibrosis community, and Founding Adviser of QIS. Her work focuses on patient programming, community engagement, and helping patients and caregivers share their stories.

Stay in the Loop

Writing and insights, when we have something worth sharing.

If this way of seeing the work resonates, sign up and we will reach out when we publish something new. No noise. Only what is worth your time.

Subscribe Start a Conversation