REPRESENT: Building trust and trustworthiness in early cancer detection research

Together with co-investigators from UCL, OHSU and Manchester, I will be leading REPRESENT: A Community Engagement Roadmap to Improve Participant Representation in Cancer Research Early Detection. Funded by the International Alliance for Cancer Early Detection (ACED), I will be working together with renowned academics in Public Health, Epidemiology, Medicine, Genomics, Social Sciences and Public Involvement to explore how and whether community engagement approaches facilitate trust-building between cancer detection researchers and ‘underserved’ communities, and what opportunities can be fostered to negotiate the values of clinical research for some of the publics that biomedical stakeholders have historically wronged.

My hope is that, through this year-long multidisciplinary project, we can start addressing the disconnect between ‘engagement’ as it is seen by clinical researchers and what we could consider a ‘true partnership’ with communities in the UK and the USA.

PROJECT SUMMARY:

Members of the public are at the heart of any early cancer detection effort; they are pivotal to make early cancer detection approaches socially acceptable and to increase the uptake of detection technologies. Yet, previous studies show uneven rates of participation in cancer research across sociodemographic and protected characteristics, with institutional and workforce barriers related to cultural competence generating an important challenge. Authentic and sustained community engagement between health research centres and those communities is therefore necessary to improve diversity in cancer early detection research. Informed by published research toolkits (e.g. NIHR INCLUDE, EoE CLAHRC, THIS PPI), this multidisciplinary study seeks to address the underrepresentation of underserved groups in early cancer detection research by advancing a sustainable and mutually beneficial approach to community engagement and involvement. Through consensus-building and participative techniques with community representatives and experts, we will co-design fieldwork activities, evaluate two case studies at OHSU and Manchester, and discuss approaches that improve the science and the health outcomes of people from all possible backgrounds. Identifying transferrable mechanisms across different community engagement approaches, we will design a “roadmap” that is respectful of regional realities to help us fostering trustworthy research partnerships across ACED Centres.

As part of this collaboration, I plan to carry out fieldwork in Manchester (UK) and Oregon State (USA) during 2022. I seek to critically examine ethnographic examples from laboratories, outreach efforts and policy documents to tease out what it means and what it takes to ‘engage’ with local communities in healthcare, and how ‘biomedical progress’ might look like when it is seen beyond patients’ medical submission and compliance. This analysis hopes to contribute to the redefinition of ideas of ‘genomic justice’ after the Covid-19 pandemic and the Black Lives Matter movement.

ELUSIVE RISKS: Engaging with the so-called ‘hard-to-reach’ in their communities

Beyond biomedical spaces, my fellowship seeks to better understand why only some people can genuinely participate in narratives of ‘biomedical progress’ and how those experiences impinge upon emic notions of trust and belonging.

The CRUK pump-priming grant ‘ Elusive Risks’, (2019-2021) has explored the social worlds of ‘structurally vulnerable’ communities in Cambridgeshire and how their experiences of care and risk inform their strategies to prevent disease and live well. To read more information about the rationale behind the project, click here: https://www.socanth.cam.ac.uk/news/engaging-so-called-hard-reach-cancer-field-research

Our stint of fieldwork and ongoing relationship with some of the groups we met has led to an opinion piece and forthcoming book chapter.

To wrap-up this project, Kelly and I are organising an arts-based exhibition and roundtable event with community representatives, academics and health professionals. Depending on social-distancing restrictions, we hope to make it happen off-line in September 2021. Stay tuned for more information!

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.