Blog

Cinzia Greco, University of Manchester, and Ignacia Arteaga, University of Cambridge, wrote this blog along with their co-authors, about their Open Letter published on Wellcome Open Research. In this piece, they share thoughtful insight on the importance of social science for cancer research and care, and remind us to remain critical on what problems already existed in cancer research and care in the UK before Covid-19 and which difficulties have arisen as a direct result.

We are all early career researchers doing social research on cancer using ethnographic methods, such as participant observation and qualitative interviews. Our research focuses on different kinds of cancer (brain, breast, colorectal, lung, ovarian) and on different topics. These include patients and support networks’ experiences, the structuring of care pathways, medical travel, and looking at cancer as a chronic disease.

Disrupted services

We observed two different levels of disruption caused by the impact of COVID-19 in our fieldsites. The first were the disruptions to cancer care brought about by the pandemic in terms of cancelled appointments, re-deployment of health professionals away from cancer services, delays to diagnosis and treatment, the suspension of many clinical trials, and the change from face-to-face consultations to those conducted over the telephone.

The second level of disruption arose through the difficulty of documenting the on the ground “realities” of such issues through our ongoing ethnographic work. Our research normally requires our presence, as researchers in the field. This is because our bodies and subjectivities are an important tool through which experiential issues are understood and analysed.

Yet, ethnography has no therapeutic component and therefore was (and continues to be) difficult to justify to those managing access to clinical research sites during a pandemic. It is also striking how different the capacities of our various fieldsites (whether a laboratory, hospital, or other community setting) have been in accommodating a return to research. This was particularly noticeable over the summer, when there was a partial easing of the restrictions.

Inequalities in cancer care

There are several kinds of inequalities in cancer care. Globally, there are extreme differences in terms of the availability of diagnostic equipment and access to treatments. Even in comparatively well-resourced healthcare services, like in the UK where we conduct our research, there are inequalities linked to social marginality, such as difficulties in accessing and following treatments, migrants with no free access to healthcare, and inequalities brought by medical innovation itself.

We have found that patients have access to very different levels of treatment depending on the existence of a targeted therapy for the genomic profile of their cancer. It also depends on whether they match the criteria for clinical trials, and on whether the most recent drugs for their cancer have been approved for use in the NHS.

Delays and cancellations

The pandemic has exacerbated the issues linked to the difficulties of accessing and following treatments. There have been delays to diagnosis and treatment of cancer. This has potentially worsened the impact for patients with aggressive kinds of cancer, for whom even minor delays can significantly worsen the prognosis. We will only be able to assess this latter point, however, when enough time has lapsed.

We still do not have sufficient data to fully appraise the extent of disruptions. Some literature is starting to confirm the disruption to cancer services in the first months of the pandemic, as well as disruption to health services for other illnesses. Even though we know that focusing on particular medical conditions somewhat occludes interactions between disease conditions, cancer and mental health included.

It is worth remembering, however, that cancer care is far from homogenous or evenly distributed across the country. So, we should be careful when comparing outcomes during the pandemic. We must attend to the epistemological basis of our comparisons. Whose experiences are being made exemplary within cancer care and beyond? Across what time frames are we to make these comparisons?

Prioritising and resource allocation in a pandemic

One key challenge in the clinical framing of cancer during the pandemic is that it is often not considered to be an immediate life-threatening emergency, such as an acute cardiac episode, although it is often characterised by highly aggressive episodes. This means that a patient with cancer might experience delays because of the pandemic and because new symptoms and sensations might not count as a medical emergency that guarantees health-seeking in this context.

This delay can in some cases have dramatic consequences for the prognosis of the disease and the lives of those affected. This is particularly the case when there is a fairly small “window of opportunity” of performing a procedure, like surgery, for example, the success of which can depend on the relative size of a tumour.

Understanding the impact of cancer on patients and families

The idea that social, economic and political elements, alongside the biomedical ones, influence health and illness, is central in the social sciences of health and illness. The social sciences are uniquely equipped to explore how the organization of healthcare systems, pathways of care, and access to treatments influence the personal and social impacts of a cancer diagnosis. Social science methodologies can explore the macro and micro aspects of the experiences of living with cancer and its general impact on the life and wellbeing of patients and their families.

As Sue Chowdhry, Emily Ross and Julia Swallow write “Methods shape how and what we know […] As researchers, who we are able to observe and engage in our projects is a key concern, as we ask what and whose realities, experiences and practices might be privileged over others in the context of contemporary cancer care, and in relation to the healthcare worlds (re)shaped by COVID-19”.

Cancer is a field in which there are ambitious plans for the transformation of treatments, such as the idea of personalised medicine. Social scientists have repeatedly and powerfully shown that these transformations, and the ways in which they are developed, tend to have important social determinants that inform how cancer emerges in particular circumstances and its stakes are experienced by people.

Revealing a fragmented health system

It is often said that the conditions of the current pandemic are ‘unprecedented’. However, the pandemic has created difficulties in cancer research and care, and in healthcare more generally, that have followed the same lines that social scientists have identified as critical in the pre-pandemic context. This includes the increasing privatisation of care services, the disjointed articulation of cancer and other kinds of biomedical and social care, the potential exclusionary practices deriving from the underrepresentation of certain groups in clinical research, and the postcode lottery through which quality and equality of clinical outcomes are distributed across socio-demographic profiles because of differences in screening, diagnosis and treatment.

The pandemic has highlighted and exacerbated social inequalities, and social scientists could help understand and counterbalance these inequalities through thick description grounded on people’s everyday circumstances, and critical analyses that keep in sight the long term processes affecting opportunities for innovation and change.

Seeing things from a different perspective

There are components of both illness experiences and care practices that are not standardisable or measurable through quantitative metrics. It is important to have guidelines and evidence-based medicine. But it is also important to recognise that the way in which healthcare is organised and experienced by clinical researchers, health professionals, patients, relatives and others go far beyond these. Social science research, and qualitative social science in particular, can help understand these important components taking into consideration the diversity of perspectives of multiple stakeholders and the circumstances in which they are situated.

Why we need to talk openly about healthcare

We think there should be an open debate on how research is carried out, what kind of research is deemed necessary, and what different kinds of research can highlight critical points in healthcare. We chose an open platform to maximise the accessibility of our argument as we would like to extend the debate beyond our domain, both as social scientists and as academic researchers, towards larger audiences.