What Does Care Do? Reflections on Care in Medical Research

One morning in the paediatric ward of a hospital in a small town in Tanzania, a small boy of around three years old was carried in by his father. The boy, dressed in jeans and a striped t-shirt, appeared very ill and fatigued, and clung limply to his father. He was a participant in the malaria vaccine trial that was running out of the research centre that had been built across the parking lot, to support the testing of a malaria vaccine in a Randomised Control Trial. The paediatric ward provided care for clinical trial participants and also any child in need. A nurse in a bright pink uniform asked the father information about his son as she filled out paperwork reserved for those enrolled in the malaria vaccine trial. Another nurse put on a pair of latex gloves and tested the boy with a glucometer and collected blood from a vein on the top of his hand, which was then placed in a sample tube. Barely conscious, the boy did not put up much of a fight against the procedures. He was tested for malaria with a Rapid Diagnostic Test and found to be positive. He was placed in a bed reserved for ‘Emergency Cases’ and his father sat worriedly in a chair next to him while a nurse treated him. The blood collected from the boy was tested in the internationally standardised laboratory at the research centre to confirm the malaria diagnosis. Asking the doctor how long it would take for the boy to get better, he answered: “We anticipate 48 hours.” I asked the doctor what the benefits were to participants for joining medical research. The doctor smiled and said, “Care. They are provided with quality care.”

This description of health care provision may not be particularly exceptional but it is when compared to government funded health care settings in Tanzania. Glucometers, Rapid Diagnostic Tests for malaria, medicines and even latex gloves are not always reliably available and laboratories are in short supply and many do not meet international standards of operation. But due to outside funding from wealthy organisations in Europe and the United States for the running of a clinical trial for a malaria vaccine, this kind of care was available to every child who came to that paediatric ward during the three years that the trial was ongoing.

This paper explores the health care that was provided through this malaria vaccine trial in Tanzania. How is health care understood and reflected upon by vaccine trial staff and health care providers that I encountered? What is the role of particular resources – including drugs, medical devices and staff – in providing care? What are the various impacts of health care when it is provided through medical research? Through this paper, I would like to begin a dialogue about the concept of care and its role in medical research.

Comparing Care

Over three years, participants of the trial received health care. Care was delivered in the paediatric ward of the hospital and at eight health care dispensaries that were built in surrounding villages. These dispensaries were all build near or next to a government-run dispensary. Each dispensary had shelves filled with drugs, boxes of latex gloves, stethoscopes, Rapid Diagnostic tests and other medical devices. In the trial-run hospital and dispensaries, clinic officers and doctors were available 24 hours a day. Emergency care was available and a van was sent out to participant homes, if needed, to pick up a sick trial participant and take them to the district hospital. Additionally, a fieldworker resided in each of the villages that was involved in the trial. These fieldworkers were available to diagnose and treat children for minor ailments.  ll tests, drugs and care were free of charge. Many trial staff members spoke about the health care provided through the trial as being of a higher quality than what was provided in the public health care system and they took pride in the care they provided to people.

The care delivered by the vaccine trial stood in stark contrast to what was often available in the public health care system. Since the dispensaries that were built for the trial were situated next to government dispensaries, it was hard not to compare them. In the government-run dispensaries, underfunding of the Tanzanian medical system means that health care staff are overworked and under-payed, with some having to wait for months to receive pay cheques. Medical devices were in disrepair and there were regular stock-outs of drugs. Although care for children under the age of five is technically free of charge in Tanzania, drugs often had to be purchased in private pharmacies out-of-pocket if they were unavailable in public health care facilities. The government-run dispensaries I visited were often in disrepair with cracking concrete, rusting metal rooves and beds, and paperwork mouldering in corners. Electricity was often unavailable and staff spoke of having to deliver babies by kerosene lamp light. I was told that some health care providers refused to treat patients at night, citing bad pay as the reason why some were selective about what care they were willing to provide to patients. The health care providers working in government-run dispensaries that I spoke to felt discouraged by the situation and expressed a desire to provide better health care to patients.

Vaccine trial staff spoke about how the health care delivered by the trial filled a much needed role in a largely impoverished area. The health care provided by the trial not only benefited participants but also the wider community. If there were stock-outs of drugs or long lines at government-run dispensaries, people were directed to take their child to the trial dispensary to receive care. Every child admitted to the district hospital was given the same level of care as trial participants. There was also a sharing of resources, like latex gloves, between the trial and the public health care system. Many trial staff members expressed happiness that the trial helped provide health care to children in the community. A trial fieldworker remarked: “The medication [the trial funder] gives the people,… it helps us as Africans and as a community.”

The Impacts of Care

A way to understand care is to examine the health care provided through the malaria vaccine trial in Tanzania. As described above, the health care provided through the trial was better resourced and was often considered of higher quality when compared to the government-provided health care service. This threw up in stark relief the issues with the public health care system, indicating that it lacked the resources to provide care of a similar quality.

When the clinical trial drew to a close, participants were left to make use of the public health care system.  one were the plentiful latex gloves, Rapid Diagnostic Tests, and drugs. Gone too were the fieldworkers, emergency pick-ups, and the internationally standardised laboratories which could no longer diagnose every child who was admitted to the hospital. Thus, the services provided through the trial were temporally circumscribed. They were not well-integrated into the public health care system and the level of care was unsustainable by a health care system dependent on donor funding, which is often directed towards disease-specific, vertical intervention programs, such as bed net or HIV drug distribution. Thus, the vaccine trial did not have a long-lasting impact on health care provision in Tanzania.

Although it was not long lasting, the health care provided by the malaria vaccine trial had several impacts in Tanzania. For a few years, participants received well-resourced health care, helping them past the first few critical years of their life when they were most vulnerable to diseases like malaria. A glucometer and a digital x-ray machine were donated to the district hospital and remained there after the trial ended. There is some indication that the trial may have played a role in lowering the rates of malaria in the area. One doctor working for the trial explained that malaria rates had sharply declined from 40% in 2007 when an earlier malaria vaccine trial was conducted, to less than 3% in 2013. He thought the decline related to greater access to bed nets and effective malaria medications, things that were provided in greater supply through the vaccine trial.

Beyond the impacts on the people in the area, the provision of quality care meant the clinical trial adhered to international ethical standards and guidelines. These guidelines stipulate that for Randomised Control Trials, the placebo group must receive the best treatment currently available and that medical research conducted in resource-poor settings must also include the provision of care that is at least equivalent to that of the sponsoring country (Angell, 1997; Sariola and Simpson, 2011). The provision of quality care also allowed for staff to monitor the impact of the vaccine on the health of participants since participants were more likely to make use of a free health care service.

However, the provision of care did more than this. Communities around the trial site are now more likely to be amenable to future medical research as trial staff have worked hard to maintain positive relationships with community members who welcomed the trial and the free health care that it provided. The care also led to the extraction of blood and information from participants and their parents. All the evidence collected during the trial left Tanzania for Europe and the United States and did not feed into the national health system and therefore will not directly impact the health of Tanzanians, unless the malaria vaccine is made available in the future. Overall, this trial helped support the development of the malaria vaccine that could lead to great profits for the vaccine manufacturer and it aided the expansion of medical research and pharmaceutical companies further into rural Africa.

To conclude, many trial staff members expressed that health care provision was an important trial activity that made their work possible. Also, trial staff took pride in the work they did, knowing that they provided a superior service to that found in government-run health care facilities, due in large part to the resources that were available. However, the care delivered through the trial had several impacts and not all of them are what might be expected from the seemingly positive word, care. This account demonstrates that while care is often understood as a positive concept, one that evokes ideas of selflessness, giving and kinship, it can also be provided as part of a transactional exchange that can be extractive, limited and unequal.

Works cited

Angell, M. (1997). The Ethics of Clinical Research in the Third Word. The New England Journal of Medicine, 337(12), 847-849.

Sarioloa, S. and Simpson, B. (2011). Theorizing the ‘Human Subject’ in Biomedical Research: International Clinical Trials and Bioethics Discourses in Contemporary Sri Lanka. Social Science & Medicine, 73, 515-521.