American College Of Surgeons - Inspiring Quality: Highest Standards, Better Outcomes

From the Director's Desk

Where Have All the Stories Gone? A Reappraisal of the Patient Record

Heidi Nelson, MD, FACSHeidi Nelson, MD, FACS
Medical Director, ACS Cancer Programs

Who and what purpose does the medical record serve? As we approach the Commission on Cancer’s (CoC) centennial, it is a good time to reflect on the past and imagine a future state for the patient record, given that cancer care documentation has been a CoC standard for at least 67 years. The present-day record has evolved significantly, capturing critical technical and medical information to communicate between providers and facilitating the recall of notable medical details. Most of us also see it as the place where patient stories are gathered, stories that leave important clues for deciphering who the patient is and what brings him or her to us.

In many ways, a good listener can hear in the story the true voice of the patient, his or anxieties, preferences, situational difficulties, subtle sufferings, as well as aspirations and hopes. The story is where providers and patients share their humanity, that intimate space we occupy together, even if for just a little while. The story was one way that providers could recall the wholeness of the person behind the disease. Indeed, wholeness itself seems to be what is most missing in today’s medical care and record. The electronic medical record (EMR) mirrors the fragmentation of current medical care, reflecting that care has become so complex it is hard to gather and consume in one place. Fortunately, the patient is still in the record, through direct queries and the perpetual replication of the original story at time of presentation, yet something is lacking in this copy and paste approach.

Since the current EMR is driven by billing, unsurprisingly, the record is focused on cataloging diagnostic and therapeutic details. Most of us wish for the day when the sum of the record would be more than the individual parts so we could still see the whole of the patient, beyond the disease. It is not as if anyone set out to diminish the patient, it is just that the amount of information that needs to be documented has become outsized. As much as modern technologies are often blamed for the fragmentation of the present-day record, it is most likely that some of these same technologies will provide the solutions we seek. One small step in that direction is the patient photo in the EMR, which reminds us who we are serving. Perhaps there will come a time when images from virtual visits will be included in the record as a way of documenting health care problems and solutions where they play out most prominently, in the home. With any luck, efforts to overcome the burgeoning of medical complexity will be tackled through new knowledge management strategies that convey the forest for the trees. Since stories are still told and valued by caregivers, an optimist would believe it is just a matter of time and effort before the future record will rediscover how to feature the one thing that matters most, the patient.