The Things They Carried: Paper Records, the Improvised Visit, and Guideline Adaptation in Oncology Care in Botswana

Shekinah Nefreteri Elmore, MD, MPH

Resident, Harvard Radiation Oncology Program

PGY3 

In Botswana, while each hospital keeps some of its own records, the bulk of the important things, including physical radiology images, biopsy reports, and past clinical assessments, travel with the patient. Who better to be the keeper of records than the recorded? This is how things once were at the Dana-Farber, I recently learned, chancing upon a vintage poster that said “Please remember to bring your records to your doctor’s visit!” And, we in the United States are again on our way back to this reality in its new form with patients increasingly accessing their records through an electronic format though a laptop or phone application.

Besides the practicality of having all of the relevant records in one stack, there’s another a tangible benefit of looking at the records with the patient: there is a sense of creating the patient’s story together. The visits generally go something like this. The physician and nurse sit on one side of a hefty desk. The patient and a family member on the other side. A small folder is presented across the wooden breadth. And, piece by piece, a narrative is exacted from the clinical notes, ultrasound snaps, and physical radiographs. The chart review becomes an interaction and an improvisation.

I don’t want to be nostalgic about an era of paper records that I never truly experienced. At their best, paper records constrain you by the amount that you’re willing to write. You are intensely bound by the relevant, not by what can be cut or pasted, which makes all notes more concise and information-dense to review. If you are able to read the handwriting, that is. Or, if they have not been damaged by water or dirt or time, or even lost. If there are not so many that it would be impractical to read them all without the search function that I rely upon so heavily my home hospital’s electronic medical record. “Has this patient had a recent CD4 count?” becomes a scavenger hunt that wastes valuable clinical time.

But, for the time being, the fully elaborated electronic record is a future proposition. However, once the narrative is sorted out and the diagnosis discovered, there is the need for new improvisation: determining the treatment plan. For generalist oncologists, even with a breadth of knowledge and years of experience, it can be challenging to know just what to do for each of the myriad oncologist conditions. The oncology team between the Ministry of Health of Botswana and the stakeholders from hospitals that provide oncology care are working to adapt and approve clinical guidelines for oncology that will ease an unnecessary part of this improvisation. While guidelines from national and international cancer organizations exist, they are often targeted to a scope of practice of high-income countries. Oncologists in low and middle income countries then have a much more complicated improvisation to adapt, on the fly, these guidelines to the patient in front of them with the resources available in their particular system. Country and region specific guidelines remove this pressure, allowing oncologists to practice systematically and to the best of their ability given resource constraints. The program to adapt guidelines in Botswana has started with the most prevalent cancers, creating simple to use guidelines that can be available in print and on laptops in the clinic. Supporting this project has taught me about equity in resource allocation and quality improvement. This is the unglamorous and important process of global health, bridging the improvisational to the systematic in the care of patients and the building of systems.