Thursday, November 2, 2017

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.

Endoscopy or the Mirror Exam: Guideline Adaptation in Oncology Care in Botswana




Shekinah Nefreteri Elmore, MD, MPH
Resident, Harvard Radiation Oncology Program
PGY3

I was thrilled to be back in Botswana in the oncology department at the Princess Marina Hospital, the large Ministry of Health facility in the Gaborone. I had traveled there once before during my intern year for a month long rotation project. While I already came to the experience with more than a year at an oncology facility in Rwanda, I hadn’t yet begun my radiation oncology residency, and thus had had little formal oncology instruction. Coming back with nearly a year behind me did wonders, both for how helpful I was able to be to the clinical oncologists in their consultations, but also how I saw the system and my project. Tasked with helping to think through how complex, international cancer care guidelines could be simplified to meet the needs of oncologists and their patients in Botswana was both more enriching and more nuanced after a year in my training program.



Sitting with one of the clinical officers in the outpatient oncology clinic, we met a lovely, older patient with a head and neck cancer. He was my first such patient, as my rotation in this specific anatomic site would take place in the next academic year. But, with all of the teaching conferences and articles that we benefit from, I knew some basics and could help and follow along with the more experienced doctor.

We proceed to a physical exam after getting a close history, feeling lymph nodes in the neck carefully and looking at the dusky, white, plump tonsil that harbored the cancer with the help of a tongue depressor and pen light. Though I’d never done it or seen it, I knew that the next step was the completely but baroquely named nasopharyngolargyngoscopy, or passing a thin, fiberoptic camera scope through the patient’s nostril and down to the precipice above their vocal chords. This would allow us to see what path of local travel the cancer had taken and hone down on our treatment recommendations. Asking the doctor if the scope would be done, she said that it had been broken for some time.

Guidelines are a complicated series of hopes and certainties, in this sense. While it is fine and likely appropriate to recommend an endoscopy for staging in a head and neck guideline in Botswana, because technically there is a scope unlike in some more resource-constrained settings, recommending this as the only means of staging would be an unfortunate omission of other possibilities. The more viable options and the more creativity we can bring to this process, the better.

For example, while endoscopy has become a mainstream practice, this is very recent. Previously, a “mirror exam” or use of a simple dental mirror, light source, and head mirror provided physicians with a comparable view of the same terrain. Both options should be included in such guidelines. And, further, an assessment of how often one or the other is performed could be captured over time to document the true availability of advanced technologies such as endoscopy and to trouble shoot their breakdowns. It would have been easy to write a guideline that included endoscopy as the only option, simple because no time on site, no time in clinic with the actual care providers had taught me any better.

My time in Botswana reinforced the lesson of global health and implementation that I learn again and again: we must always work in partnership to know what is realistic while still championing what is ideal.