FACILITATOR’S NOTES
This case study describes the activities of a fieldworker who accompanies one of ‘his’ research participants through their treatment at a public hospital. The fieldworker wants to ensure that the participant receives the best possible treatment, but also to check that the data recorded is of the high quality needed to meet standards for reporting Serious Adverse Events (SAEs). In the process, this fieldworker experiences friction with hospital staff.
This is a common medical research situation. As well as raising questions about the different resources available to research staff and government health workers, the story suggests differences in how the two groups perceive each other and how their communication styles differ, and points to cultural, gender, and generational differences.
The group could be guided to distinguish between different levels of interactions in the story: the personal level
(experienced by the fieldworker and hospital staff), the institutional level (the role of the research organization and the hospital), and the global level (the systemic resource gap between international research and national funding for healthcare). Possible solutions could emerge at any of these levels: changing personal styles of communication; more frequent engagement meetings and other shared activities between the hospital and researchers; or larger-scale structural interventions like long-term partnerships to address systemic inequality and improve hospital facilities.
Ideally, the discussion would move beyond Jonah’s shortcomings as an individual, to consider institutional practices. This case invites practical solutions to improving
LEARNING
OBJECTIVE
To explore different viewpoints and interests when government health facilities collaborate with transnational research bodies – and to explore the challenges facing individuals in an unequal systemKEYWORDS
Standards of care Clinical responsibility Government Capacity building Research versus careINSTITUTIONAL RELATIONSHIPS FACILITATOR’S NOTES Helping hand
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communication and collaboration. The institutional practices in the study can be questioned: how was the research project introduced to healthcare personnel? What sort of agreement exists between the research programme and healthcare institution? Is this in writing, and accessible to staff? Does it specify particular practices and resources? How often do
representatives and staff from the institutions meet, and at which level? What ownership does the hospital have in results and publications? Do hospital doctors receive any other benefits from the collaboration, such as training? What sorts of stereotypes exist with regard to the other group? The discussion could be guided towards improvements in any or all of these issues, perhaps through formal procedures, including complaints procedures on both sides.
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HELPING HAND:
WORKING WITH PUBLIC HOSPITALS
BARRABAS ATE THE CHICKEN JONAH HAD BROUGHT HIM, WHILE JONAH CHECKED HIS CHART FOR MISTAKES
THE STORY
multi-country malaria vaccine trial, following good clinical practice and international trial regulations, monitors all adverse events, and offers full in- and out-patient care for participants throughout the project. Sick participants are referred for in-patient care to the national hospital, where the research clinic is hosted. Costs for hospitalization, laboratory and other procedures, and drugs, are paid for directly by the trial. This collaboration has been in place for several decades, but without a detailed written memorandum.
Barrabas, the oldest study participant, suffers from serious heart arrhythmia. Halfway through the trial his concerns worsen and he is admitted to the hospital. Jonah, a fieldworker who has become friendly with Barrabas after repeated home visits for data collection, visits him in the ward several times a day.
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Jonah previously worked as a porter in the same public hospital and is familiar with hospital routines and procedures (as well as with their potential shortcomings). He begins each day by reading Barrabas’ medical file. If he does not find the file by the bedside, he goes to the nurses in charge, whom he knows, and runs through the file with them.
Based on his on-the-job training as a fieldworker on this study, Jonah identifies gaps in both the treatment and the routine measurements that he needs for adverse event reporting. Today he sees that no respiratory rates were taken (or recorded); temperature values are missing; and it is not clear when the patient was last seen by the consultant. Jonah, who has been employed by the international research organization for several years, and has become very self-
confident, scolds the young hospital nurse, and explains (in somewhat politer terms) to the matron of the ward that proper routines had not been observed – but not why it matters for the trial.
Jonah fills in some of the missing records himself after taking rates and measurements, and hands the file back to the clinician in charge who has arrived for his ward round. The clinician mentions that Barrabas’ heart rates are a bit low and that an ECG is needed. Seeing that this is in the best interest of ‘his’ patient, Jonah immediately assures the doctor that the research project will pay for the ECG and insists that a written request is immediately prepared. Aware of the complicated procedures of queueing, appointment-making, and payment for such procedures, Jonah goes and pays the small fee to the hospital cashier, and takes Barrabas straight through to the ECG nurse. Just 20 minutes later they are back on the ward.
‘This ECG alone would have taken a few days, if I had not been there,’ Jonah comments to himself. ‘How can we work with this hospital if they can’t even take a pulse regularly? How can I fill my SAE form with this sort of data?’
When Jonah returns to the research clinic in a different building, the study coordinator tells him that he has had a call from the hospital, complaining about interference in clinical
procedures. They both shrug it off as the sort of ‘inevitable’ friction which has to be ‘endured’ in order to procure adequate care and valid data.
After work that day, Jonah passes by the supermarket, and buys half a roast chicken to bring to Barrabas on the hospital ward. He noticed earlier that Barrabas has lost weight whilst in hospital. Jonah has now known Barrabas for two years. He has visited him at home, discussed personal problems with him, and assisted in his treatment on occasion. Visiting him in hospital, Jonah feels like he is not just visiting a research participant, but caring for a friend.
QUESTIONS
Why is Jonah’s intervention in the hospital setting relevant to the success of the research? How might it endanger it?
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What motivates Jonah’s detailed investigation and engagement with Barrabas’ care? What expertise does Jonah draw upon, and how did he come by it?
What happens to the knowledge that Jonah brings to, and gains by, his work in helping Barrabas? What else might he have done with this knowledge – in relation to both the hospital, and the research team?
What do you think about Jonah’s relationship with the public hospital staff? What different factors shape this relationship?
Why did the hospital doctor call and complain about Jonah’s activity in the hospital? Could the doctor have done something else? What do you think about the reaction of Jonah and the study coordinator? Do you think such friction is ‘inevitable’ and must just be ‘endured’? Why do you think Jonah and his colleague view it this way?
How might knowledge of the way the local hospital works impact the findings of the research? Do you think this is helpful? What changes could be made in referral policies for the trial?
What might be done, at what levels, to avoid the situation repeating itself? (The facilitator’s notes have some suggestions.)
What do you think individuals can do when facing structural inequalities in healthcare?
ACTIVITY
Put yourself in Jonah’s shoes. What would your reaction be to the shortcomings of the hospital’s routines and provisions? What would you do about them? What care would you have to take when doing so? Then take the opposite perspective, of the different members of staff in the public hospital. How do they each perceive Jonah? How might they react next time?
REFLECTION ON YOUR OWN EXPERIENCES
Can you think of contexts where research staff or clinicians at your workplace draw upon specific local knowledge or informal contacts in order to help research?
Are there similar situations where knowledge of your local health system is necessary in order to ‘make ends meet’ and facilitate successful collaboration?
How far should a research project go in addressing the shortcomings of local healthcare provision? What are the challenges of this?
Are there times when you have felt helpless in the face of global-level inequality? If so, how have you responded?
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FURTHER READING
Chantler, T., Otewa, F. et al. (2013) Ethical challenges that arise at the community interface of health research: village reporters’ experiences in Western Kenya. Developing World Bioethics 13(1), 30–37.
Street, A. (2012) Affective infrastructure: hospital landscapes of hope and failure. Space and
Culture 15(1), 44–56.
Sullivan, N. (2012) Enacting spaces of inequality: placing global/state governance within a Tanzanian hospital. Space and Culture 15(1), 57–67.
Whyte, S. R. (2014) Therapeutic research in low-income countries: studying trial communities.
INSTITUTIONAL RELATIONSHIPS FACILITATOR’S NOTES Whose capacity?
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COLLABORATION THROUGH
CAPACITY BUILDING
FACILITATOR’S NOTES
Capacity building in the South is one of the key aspirations of collaborations in transnational biomedical research, especially in partnerships involving researchers and institutions from the North. Collaborations have been hailed as beneficial to all involved, and many collaborative agreements have capacity building as one of the core objectives and an indicator of good collaboration. Although the general consensus among African research scientists is that collaborations are good and must be encouraged, some disquiet is emerging regarding the actual benefits that emerge in different collaborative
arrangements.
This case study invites us to think about a range of issues which emerge within collaborations, especially between unequal partners. Most North-South collaborations involve the transfer of a substantial amount of resources (funds, technical expertise and organization) to the African institution, in exchange for access to desired patient populations and expert colleagues who can shepherd proposals through local ethical review. Collaborations imply equality, but can there be equality between unequal partners? This case study asks us to consider whether collaboration as a paradigm serves to create the desired equality or, rather, hinders open discussions of the same. Should collaborating partners strive for more ‘equitable’ collaborations, or change the entire paradigm?
LEARNING
OBJECTIVE
To consider the nature of scientific collaborations and the rhetoric of equality between Northern and Southern partners, especially around questions of capacity building of both human expertise and infrastructureKEYWORDS
Capacity building North-South relationshipsINSTITUTIONAL RELATIONSHIPS HANDOUT Whose
capacity?
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