By Marissa Mika
1. Fieldnotes from the Cancer Archives
I want you to imagine yourself for a moment in a dusty former pharmacy store for an AIDS research trial, where you can still see the word cotrimoxazole (an antibiotic frequently used for HIV patients) written in Sharpie on the wooden shelving. It’s a warm day, not too hot, not too cold, not too rainy, not too dry. It’s a typical day in Kampala. You are here in this room, now repurposed as the Uganda Cancer Institute’s INACTIVE records room, surrounded, and I mean literally surrounded, floor to ceiling with the files of mainly dead or long forgotten cancer patients. There is a digital SLR camera on a tripod for taking photographs of a selective sample of the thousands of patient records housed in this room dating back to the 1960s. There is rat excrement on the floor. Some of the files are water damaged. This large former supply closet, no more than twelve feet by six feet, runs along the wall of the current records room, which is bustling today. Through the metal cage of the door, you can hear the records staff interface with patients just coming in to open up files for the first time. Their information—name, tribe, age, village, cell phone number—is written into “Face Sheets” which have remained in the same format for the past 40 years.
This field site, essentially an archive, is where I spent a good portion of 2012 while conducting historical and ethnographic fieldwork on the history of cancer research in Kampala, Uganda. In brief, my research traces the history of how a small experimental chemotherapy research site established by the US National Cancer Institute and the Makerere Medical School’s department of surgery in 1967 remained open through a long period of political instability, the HIV/AIDS epidemic, and governmental neglect. Today, thanks to research collaborations and newfound institutional autonomy from Mulago Hospital in 2009, drug stocks are more plentiful, more nurses are on the wards, and the number of Ugandan oncologists has increased from one in the year 2000 to nearly 20 in 2020. The number of patients, everyone agrees, has also increased dramatically, crowding the two original wards that were never designed to provide comprehensive cancer care for a population catchment of 40 million.
The Uganda Cancer Institute was founded on the heels of a set of chemotherapy experiments conducted by Denis Burkitt and colleagues in which children with Burkitt’s lymphoma were given single doses of cytotoxic drugs to see if this would create tumor regression. The results of these experiments were impressive enough that the UCI was established to study the responsiveness of tumors to combination chemotherapies in a context where far more attention was paid to patient retention and the informed consent of parents. Speaking with the current director of the Uganda Cancer Institute, he notes that the sort of “heroic medicine” conducted by Denis Burkitt in the 1960s would not be cleared by a Ugandan or American Institutional Review Board today. But the reality still stands that there are certain sorts of questions and patient populations that are available in a Ugandan setting, such as children with Kaposi’s sarcoma or endemic AIDS related malignancies that are just not as prevalent or present in the United States or the United Kingdom. It is perhaps no wonder that “Research is Our Resource” is the current slogan of the UCI.
When I first found out that the Uganda Cancer Institute had not thrown away its old patient records, I was stunned. And the INACTIVE records room is a treasure trove. Not only are there patient records from the 1960s to the present, but there are old personnel files, log books marking the events of a night’s shift on the wards, and old oncology journals from the 1970s. There are home visit reports from epidemiology studies in the 1960s. There are patient records written out on student exercise notebook paper in the 1980s and assembled with tiny strips of gauze—a signal of just how scarce things were during Uganda’s civil war in the early 1980s. The archive is in remarkably good shape given the years of benign neglect behind a padlock. As Dr. John Ziegler, the founding director of the UCI said to me in email correspondence about these materials, “Uganda is extraordinary in that nothing is discarded. Offices are like museums.”
I’ve been thinking quite a bit about this museum as I make final revisions on my book manuscript now in 2020. I’ve returned to my old handwritten ethnographic fieldnotes, oral history interview transcripts, and scientific journal articles. I’m also beginning to pore over old patient records and institutional correspondence once more through my digital photo records, which are housed on a hard drive in California. As I revisit these records, I am all the more convinced that it would be a tragedy to let these materials sitting in the Kampala museum crumble to dust. And at the same time, as I look back through these material remains of cancer patients–notes from medical ward rounds, photographs of shrinking tumors, biopsy reports, orders to wrap up the body and take it to the morgue, maps to the homes of patients and their families dozens of miles off tarmac–I am deeply unsettled by the high degree of access I have to these intimate, bodily stories and the glimpses they offer into these all too abruptly extinguished lives.
In this first post, I discuss the actual labor of working at the UCI’s archives and in the United Kingdom during an intensive year of fieldwork in 2012. I discuss both the embodied work of fieldwork in an archive, and also some of the practical considerations of what the obligations of a historian ethnographer are to her field site. Following Nicholas Dirks and his ethnography of the archive, I revisit old ethnographic fieldnotes from this period and use them as a source to reflect upon the politics, ethics, and practicalities of working with these materials. Subsequent blog posts will discuss the ethical and financial challenges of creating a durable digital and physical archive for these materials, as well as a discussion of other forms preservation through photographs and public history with Andrea Stultiens.
a. Of Ownership and Access—January 2012
Since my return to Uganda in early January, I’ve been surprised by both how easy and how difficult it has been to readjust to living in this country. A large part of my social and practical work for this past month has involved turning conversations of support and bureaucratic letters of research clearance into the concrete action of a formal introduction. Although the director of the Institute warmly supports the research I am doing here, a misstep in terms of performing official introductions has set my work back by about two weeks and counting.
This wrinkle came up after I met with the Uganda Cancer Institute director and gave him an update. I laid out a sensible plan up until the end of March, and at the end of the meeting, there was a green light to start from the director.
But we forgot one essential thing. When in Uganda, formal introductions and a letter with an official stamp and signature are needed. It slipped both of our minds. At first, this did not seem to be a problem. I had a wonderful meeting with the current records manager, who was happy, after a bit of a negotiation, to show me what was behind the door marked “Inactive” in the records room.
But the welcome soured the following day, when I showed up at the records room expecting to get started on an inventory. The current records manager stepped out for a while, and then came back and said, “I’m sorry, but I need a letter and a proposal before you can work here.”
The substance of the negotiations that followed between me, the records manager, and the head of research at the UCI weren’t about stamps or procedures or methods at all. It was about ownership. If I take an inventory of the Inactive records room, which is desperately needed if the Institute applies for funding to preserve these materials, who owns the inventory? Is an archival inventory the same thing as a dataset created from the bodies and fluids and outcomes of the Institute’s patients? If I take digital photos of patient files, am I obligated to provide copies? Where does the past of the Institute end and the present begin? These ethical issues of “who owns what” also seem to be shorthand for an even bigger issue about whose expertise counts. What if the historian gets something clinical “wrong” and makes a false generalization about how cytoxan dosing practices changed over time? Shouldn’t it be the clinicians who are writing the history of cancer care in Uganda?
I do not know how common it is to renegotiate access to a field site after receiving Institutional Review Board clearance and an institutional go-ahead for historical and ethnographic research. But I do think these conversations about access, ownership, and expertise that unfolded need to be understood within a politics of hospitality. The expatriate researcher is, and will always be, a guest. Formal letterhead, official stamps, and proper introductions all work to transform the expatriate researcher into a guest. And a guest who behaves badly will be asked to leave. I also think these discussions cannot be separated from the historical context of the UCI itself, where over the years expatriate scientists have sent tissues and biopsies and blood to freezers and laboratories overseas. In at least one such instance, samples taken in the 1960s and 1970s were kept at the US National Cancer Institute in Bethesda and went missing (either lost or thrown out) without any sort of infrastructural redundancy in Uganda.
Of Cataloging, Standardizing, and Organizing—March 2012
I fortuitously found myself able to sit in on a meeting about long term plans for the Inactive room. When I initially spoke with Dr J, he was like, “no, this is a managerial meeting,” but I’m really happy I just didn’t bother to move. So they are planning on renovating and reorganizing the Inactive records room to make more space for Deaths Files and Inactive records. The Inactive room houses much of “M’s [the former director’s] things,” and this is true—the medical journals, the boxes of research articles and correspondence, the personnel files—these are Institutional archives to be sure, but are different from the records. So the plan is for cleaning, organizing, and I hope cataloging. What’s great about this is that it means that the UCI will purchase materials like protective gear and a ladder and spearhead this reorganization project, thus making everyone take it a little more seriously, and thus making it less like I am a patron and more like I am just a person with some expertise helping out.
But there is a downside to this. The labor of creating archival space where one might be able to do historical or medical research sanitizes the materiality of these forgotten rooms. The old telephones, the pillows, and the forgotten AZT boxes all get thrown out and discarded as trash. The memories of the director’s long time secretary walking into the room and telling you how a group of men moved the contents of the director’s office into this storage room—these memories get washed away the more you attempt to organize the materials.
b. Of Privacy and Patients—August 2012
As I’m in the dusty room, pulling down patient files, photographing what I can selectively, a mzee (elderly man) comes into the records room. He is wearing a smart chocolate brown suit, a tie, and thick spectacles. I basically work in a room that’s like a cage, and so I’m hearing this conversation as it unfolds. The gentleman is unfailingly polite to A, who mistakenly identifies the man as a member of the clergy, when in fact this is a former army person. “I want to thank you for taking care of my wife here. She was a patient here in 2005 on this ward. She became good friends with the nurses. They loved her and would laugh with her. Every year around this time when I am remembering my wife, I come here to thank you for the care that you all gave her.” A suggests that this gentleman go and visit the Director to extend his thanks. I think to myself as I go back into the vault. . .that behind every single patient record that I’ve gone through, there is a constellation of family members and friends who have lost someone. And I’ll only get to sample a handful.
So back to the patient records. I pull out a bundle of Lymphoma Treatment Center files from the 1960s and begin to go through them. And about half way through the bundle, I realize that I have in my hand the file of Dr. X, who was a patient here in the 1960s and then worked at the UCI as a medical officer in the 1970s. Earlier on in the day, I was wondering if I would ever locate Dr X’s files in the hundreds. . .it seemed like a very tiny needle in a very big haystack. And here it was in my hands, and it looked so very different than I was expecting it to be. No photographs, and there on the last page of clinical notes, Dr X’s own handwriting signing off on blood work—the last entry in his file signaling a permanent remission from his lymphoma in the 1980s.
On this day, perhaps more than other days, it seemed that the living and the dead were colliding in the records room in unexpected ways. I had eaten delicious tandoori baked tilapia with Dr. X just a few weeks prior to finding his file springing to life in my hands. I had in all likelihood walked by the same nursing sisters who took care of mzee’s wife in 2005 earlier that day.
Later on, I would ask Dr. A if patients were ever allowed to look at their files. I gave Dr. A., one of the oncologists at the UCI, a sketch of the situation, but did not identify Dr. X, as a key informant and one of the first people to be successfully treated at the UCI in the late 1960s. Dr A. said, “No, Marissa, that is very bad. Patients under no circumstances are ever allowed to look at their files.” Even if they work here? “Even if they worked here.”
At the Uganda Cancer Institute, the medical records very explicitly say “Not to be handled by the patient.” Consider for a moment how different this is from the US context, where HIPAA protections grant patients the right to request and read their medical records. In this context, who owns a patient record? Does it belong to the institution? Does it belong to the patient? To the family? To the person who created the record? And what about the research afterlives of these records? More often than not patient records are used for cancer epidemiology studies or cancer registration. A master’s research student may read through hundreds of records to determine how many patients come to the UCI with an advanced stage of Kaposi’s sarcoma. A cancer registrar will work with these records to determine the number of breast cancer or stomach cancer patients that are coming to the UCI in any given year. Far less common is to read these records as a form of personal biography.
c. “Only in Africa”
After I left Uganda in October 2012, I worked at various archives in the United Kingdom , tracking down where fragments of the Uganda Cancer Institute’s early histories now scattered amongst remain in the personal papers of various British Colonial medical officers who worked in Uganda in the 1950s and 1960s. Of these gentlemen, Denis Burkitt, the surgeon who took an interest in a large rapidly growing jaw tumor, has left patient records in several different archives. These patient records are inaccessible to the public, in one case because the Wellcome Library has yet to catalog the 36 boxes of his material, many of which directly relate to patients, and in another, because Trinity College in Dublin has marked them off as “private.”
In the midst of the UCI’s archival working conditions, it is sometimes difficult to remember that it is largely the disorder and the general neglect and a lack of standardization of materials—the designation of this stuff somewhere between bureaucratic detritus and preciously private—that has been instrumental both for its preservation and its accessibility. What you can access in Uganda is not the same as what you can access in the United Kingdom.
Adriana Petryna’s notion of ethical variability in the context of conducting clinical trials is helpful here for conceptualizing how geographies, entitlements to health care, and many other things fundamentally shape how and in what ways people conduct experiments in the Global South. In the Uganda Cancer Institute’s case, experiments do travel and are fundamentally shaped by their local context. In a context where the history of experiments go back for nearly half a century, there’s also a question of what to do after the experiments have ended. When do these materials themselves become historical artifacts rather than confidential patient records and the remains of clinical trials past?
For historian-ethnographers, what are the ethics of preservation here? Despite the standardizing work of Institutional Review Boards to smooth out what constitutes privacy and confidentiality, national legal frameworks to ensure patient privacy matter. So do local cultures of what becomes private in a place where oncology is itself quite public. And then there is the problem of preserving the logic of the past. To what extent do you treat these places as archaeological sites? How do you preserve the logic of not throwing things away even as you attempt to make an archival site legible enough to be used?
Finally, and most importantly, there is the reality that archival research, especially in a setting like the Uganda Cancer Institute is an embodied, collaborative practice that cannot be stripped away from the present. How do you forge a collegial and mutual interest in preserving a collection like the UCI’s archives while attending to the very real concerns of patient privacy, an overstretched staff, and ongoing crises around space?
If permissions from all parties were secured, would you sit down and talk with Dr. X about his file? Or would you tuck it back into the sea of pinks, manilas, and browns, bundled with string, allowing it to float in the anonymity of thousands of people turned into patients, many of whom have final entries of either “lost to follow up” or “died this morning”?
A note on the text: This piece is part of a blog series based on lectures I’ve given over the years about “what is to be done” with these rich materials.
Marissa Mika is a writer, historian-ethnographer, and academic. Her scholarship examines the past and future of science, medicine, and technology. For the past fifteen years, she has worked primarily in eastern and southern Africa on the techno-politics of global health. Her current book project, Africanizing Oncology, examines the histories of survival, experiments, and creativity in times of crisis at a cancer hospital in Uganda. She holds a PhD in the History and Sociology of Science from the University of Pennsylvania, an MHS in International Health from Johns Hopkins, and a BA in Development Studies from UC Berkeley. Learn more about her work here: marissamika.com Find her on Twitter @dr_mmika
Featured Image: Lymphoma Treatment Center, 2012. Photograph by Andrea Stultiens.