NEGOTIATING VALUES (clinical research)

I am exploring the practices and views of scientists, health professionals, and research volunteers involved in the field of cancer early detection. To do that, I focus on ‘technologies’: the methods developed to diagnose cancer in people’s bodies before symptoms appear. Examples of technologies are scans, blood tests and biopsies (tumour samples).

With the focus on technologies, I am interested in:

  1. Looking at how scientists develop these technologies for the early detection of cancer,
  2. Understanding how health professionals and researchers interact with each other and make decisions when using these technologies in clinical research, and
  3. Finding out what the impact of using these technologies is for research participants like you.

Why am I doing this study? I am  personally interested in cancer, and would like to contribute to the efforts people are making to detect cancer early, so that everyone can live longer and better lives free from cancer. The results of this study will offer important insights into the experiences of scientists, health professionals and research participants involved in early detection research. This information may lead to future changes in the ways people like you are invited to participate in research studies, how test results are communicated to you, and how studies are conducted in the future.

What have I done so far?

Data collection for this study is taking place over several months across different places in Cambridge. For a social anthropologist like me (someone who tries to understand how people interact with each other and with the world around them), this is what is called ‘fieldwork’. Here I include a summary of what my fieldwork looks like!

From November 2019 until the national lockdown took place, I learnt from pre-clinical scientists in laboratories, talking with them one-to-one, and participating in weekly meetings and academic events. I learnt about the technologies they are developing in the laboratories, such as computerised algorithms, imaging techniques, cellular models, and genomic sequencing approaches to explore issues concerning the early detection of cancer.

That phase of fieldwork has allowed me to have enough information to answer the question guiding the first component of the study in good detail (red box in figure) and a publication on the topic is coming out soon (and will appear on the publications tab). Now it is time to move on and look at the second question that guides this research, by starting the second component of fieldwork (light blue box).

What is coming next? Observing different professional teams working together

To understand how researchers and health professionals use cancer detection technologies in clinical research studies, I will interview some health professionals and observe their work routines for some time. I will also observe the meetings in which different professional teams work together, to understand how they interact with each other. I am thrilled to have provisional approval from the Health Research Authority (HRA), the Confidentiality Advisory Group (CAG), and the local research clinic to join in those activities as a researcher since those activities are extremely relevant for my study! 

By taking part in these meetings, I may see or hear information about people like you (such as your name, gender, age or medical diagnosis). I will not record any of this personal information during my observations, so everything I write will always be anonymous whether patients are participating in this study or not.

I would like to reassure you that I will not record any identifiable information about patients and research participants during my observations in the clinic. I will focus on what happens in the clinic, not on the patients’ details.

Why am I following professional teams? I want to learn about the challenges that the clinical team faces day-to-day in the clinic, not only by talking with them but also observing what they do. This is to make sure I gain a full picture of what is going on in the research clinic. Observing the health professionals’ work and their meetings will help me to understand how they are working and thinking to advance the early detection of cancer in the UK.

Published by Ignacia

Research associate in Social Anthropology at the University of Cambridge

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