Edinburgh Research Explorer Cancer, COVID-19, and the need for critique

In this open letter we examine the implications of the coronavirus disease 2019 (COVID-19) pandemic for cancer research and care from the point of view of the social studies of science, technology, and medicine. We discuss how the pandemic has disrupted several aspects of cancer care, underscoring the fragmentation of institutional arrangements, the malleable priorities in cancer research, and the changing promises of therapeutic innovation. We argue for the critical relevance of qualitative social sciences in cancer research during the pandemic despite the difficulties of immersive kinds of fieldwork. Social science research can help understand the ongoing, situated and lived impact of the pandemic, as well as fully underline its socially stratified consequences. We outline the risk that limiting and prioritising research activities according to their immediate clinical outcomes might have in the relational and longitudinal understanding of cancer practices in the UK. Finally, we alert against potential distortions that a “covidization” of cancer research might entail, arguing for the need to maintain a critical point of view on the pandemic. I enjoyed reading the open letter “Cancer, Covid-19, and the need for critique”. It is a very well-written piece contributing to discussions about the entanglements between Covid-19, cancer care and social science research. The open letter addresses the impact of the pandemic on cancer care, on patient's lives and points out that this current “moment of crisis” reveals a fragmentation in cancer care that already existed before. is and It offers, for one thing, a review of the ways in which the cancer care industry and its actors all along the line - including its frontline physicians and patients have been impacted by the COVID-19 pandemic. Here, the points to accounts of patients whose have been disrupted and whose status within healthcare has changed: from those heavily dependent on the system to those too ill to be treated should they contract severe COVID.


Disclaimer
The views expressed in this article are those of the author(s). Publication in Wellcome Open Research does not imply endorsement by Wellcome.

The entanglements between cancer care and COVID-19: A multi-layered disruption
The coronavirus disease 2019  pandemic has abruptly altered the lives of millions and caused major disruptions to those classified as the most vulnerable segments of the population by the UK Government, including patients living with cancer. Millions of elective operations postponed (Sample, 2020) pathways altered (see Cancer Research UK news article), waiting times increased, screening programs suspended (Maringe et al., 2020), medical personnel under significant stress (see BMA mental health wellbing report). There was a significant upheaval to the ordinary activities of NHS trusts, professional bodies and structures already enduring austerity and managerialisation policies. Such upheaval had marked consequences for cancer care. Since the start of the pandemic in the UK, several articles have brought forward the testimonies of patients whose treatments have been interrupted or delayed or who were alerted that they would have not found a place in ICU had they contracted COVID-19 (Hughes, 2020).
Modelling approaches to statistically estimating the disruption brought by the pandemic are focusing mainly on excess mortality and life-years lost, something that it is in itself difficult to ascertain within the current time-frame. Sud et al. (2020), focusing on mortality derived from diagnostic delays, alert that " [u]nlike acute pathologies, such as stroke and myocardial infarction, the true excess mortality due to COVID-19related disruption to cancer pathways will not be fully evident for 10 years or longer". The risk in this perspective is that we would not be able to understand the disruption until well after the pandemic, when data on mortality become clear. Further, those distal statistical approaches make it difficult to have a full understanding of how and for whom cancer services have been disrupted.
In the meantime, longitudinal observational work could shed some light on the multiple tensions that are informing clinical dynamics, yet ethnographic work on cancer contexts has also been interrupted. Ethnography offers insights into different timescales, experiences, and points of view. Patients, relatives and healthcare professionals who experience proximal disruption are required to deal with novel situations and improvise care-work practices within changing terrains. Yet, disruptions are emerging across the cancer care continuum and are not limited to pausing screening and diagnostic delays, but also involve patients already in treatment and those in follow-up care. Those who are affected by advanced cancer often rely on clinical trials to access potentially life-lengthening treatments. Because of their bodily vulnerability, this segment of patients is particularly impacted by the suspension of research on cancer and of clinical trials. However, we must keep in mind that some of the features that are considered to be disruptions for the patients might not be perceived as such by the medical professionals, and vice-versa. The difficulty of in-person consultations, in some cases substituted by telephone and/or online exchanges, as well as not being able to have a relative to come along, have a different impact for patients than for clinical professionals. Understanding the different ways in which cancer care has been impacted by the pandemic therefore requires to look at an ample range of alterations, both immediate and long-term, to cancer care. Such an understanding -a project for which the social sciences are pivotal -is greatly needed in order to plan supporting mechanisms for the patients and the full reactivation of services.
This open letter is the result of an online workshop organised in late September 2020 on the mutual implications between cancer care and COVID-19, involving six researchers whose scholarship concerns the practices, experiences and ideologies informing the fields of cancer in the UK.

The fragmentation of cancer care
In addition to the disruption to NHS services, charities working both on cancer care and cancer research have experienced significant difficulties since the beginning of the pandemic, with income yielded from donations dropping suddenly and ensuing restructurations of their own operations (see Cancer Research UK blog on funding cuts). Medical charities in the UK not only fund basic and population-based cancer research, but they also offer guidance and support to patients with cancer both outside and inside the NHS, also delivering pan-cancer rehabilitation services across the country (e.g. Macmillan Cancer Support). The ongoing crisis that cancer charities are facing reveals a significant paradox. Most charitable organisations have developed either to cover areas that had limited public support (e.g. Marie Curie provides palliative care) or to cover areas from which the public services have retreated, such as the case of psycho-social support.
Due to the pandemic, even a government guided by a party historically hostile to public spending has taken some exceptional policies to alleviate bottlenecks and improve access to treatments in a healthcare service overwhelmed by demand. This has shown the possibility, and arguably the necessity, for centralising healthcare services and resources under public control to deal both with peaks in the number of cases, and the continued provision of ordinary healthcare needs. However, a significant part of the care that patients rely on is managed through charities, which because of their financing model, legal status, and organisational structure, are difficult to centralise under public control. The risk is that even if the government decides to allocate the resources necessary to avoid major disruptions to cancer services during a public health crisis, an important part of the current offer of cancer care in the UK might be significantly affected.
COVID-19 is revealing the fragmentation in cancer care that is located at the intersection between private and public management, charity and industry, also evidencing the persistent effect of austerity policies in the healthcare domain. In this fragmented landscape, some patients find comfort and support in less institutionalised contexts, such as neighbourhood, friendship or confessional groups. However, the requirement for social distancing during the pandemic has also altered the availability of these forms of help, thus worsening the quality of life of cancer patients who have needed to shield to minimize the risk of contracting the virus suffering from already compromised immune-defence mechanisms.
In this context, it is urgent that we study the real-time changes materialising prospectively so we can both shed light on changes in quick time (see Vindrola Padros et al., 2020) as well as develop rich and sustained scholarship throughout the pandemic. Such analysis better shows how forces and structures which might appear intractable were not always inevitable, as much long-term ethnographic work attests (Biehl & Locke, 2017).

(Re)shaping research practices during COVID-19: Challenges and possibilities
Social studies of science, technology and medicine continue to play a vital role in understanding interactions between biology, subjects, and environments. Eschewing simple and reductive accounts, they have tackled social worlds in their complexity and considered the mutual constitution of these domains and entities. Recent scholarship has explored how novel understandings of biology reshape our worlds, organise our societies, and inform how we understand ourselves (Wahlberg, 2018). Other contributions have mapped the social effects of biomedicine, informing changing perceptions of the body, normative definitions of what is considered to be a desirable behaviour, and public entitlements to health and care (Lock & Nguyen, 2011;Petryna, 2002). Moreover, many social science scholars have delved into the lived experiences of those seeking care, unpacking the particular relationships through which people affected by conditions withstand disease-related suffering and sometimes find relief (Das, 2015). This scholarship has also developed critical lenses on emergence, provisionality, revolutionary change and stabilisation in science, technology and care (Keating & Cambrosio, 2003). In the field of oncology, social science disciplines have played and continue to have important roles in understanding relations among experts and publics, perceptions of risk, experiences of the cancerous body, inequalities in access to standard and experimental treatments, professional practices, informal care work, and the involvement of diverse publics in cancer-related research (Arteaga, 2019;Arteaga Pérez, 2020;Day et al., 2016;Greco, 2016;Greco, 2019;Kerr & Cunningham-Burley, 2015;Kerr et al., 2018;Llewellyn et al., 2018;Llewellyn & Higgs, 2020;Swallow et al., 2020;Therond et al., 2020). Through an array of ethnographic research practices including interviews, observation, participatory techniques, and archival research, social sciences scholarship has contributed to our understandings of the promises, ambivalences, complexities and difficulties within the biomedical field from the perspective of different stakeholders, including patients, caregivers, medical professionals, scientists, and interested publics. Over recent months each of us -as social scientists, members of families, and civic actors -have found ourselves dislocated from our assumptions and routines pre-COVID-19. This visceral sense of dislocation contributes significant social and professional challenges. However, it also provides a new critical space to reflect, amongst other things, on how we are able to conduct and communicate our research in this time of COVID-19.
As large portions of our social life have been redirected online, the social sciences are also in the process of adapting methods and theoretical frameworks to better understand the challenges posed by the pandemic to those affected by cancer either personally or professionally. The discussion emerging from the workshop demonstrated how, as social scientists, our current research practices have not only been constrained by the pandemic but also reshaped. As ethnographers, we are all too aware that barriers to the "on-the-ground," in person, physicallysituated component of our work -momentarily or for longer periods -poses risks to research practice. Online and remote research, while offering safer access to the communities with whom we work, cannot fully grasp the material and contextual nuances that inform people's everyday efforts; it changes the relational dynamics between the ethnographer and participant, and the opportunities for participant-observation in field sites as a core ethnographic endeavour.
Part of the difficulties we are experiencing in relation to the current constraints of immersive and situated research methods in social research parallel those of medical professionals and patients, whose own relations have also been redrawn. For medical professionals, virtual approaches bring challenges to usual techniques of assessing, supporting, responding to and caring for patients. For patients, daily routines have been radically disrupted, care provision has been redefined with cancelled appointments and procedures, and virtual follow-up clinics. All are subject to increased uncertainties in their lives and work, coupled with on-going emotional labour that characterises provisional and highly precarious knowledge, policy and practice about the pandemic.
Moreover, online recruitment strategies in social science research can privilege participants who tend to have more resources and time at their disposal, inevitably skewing the range of lived realities we are able to encounter as researchers, given that internet access reflects wider social and structural inequalities. As with social scientists, clinical research coordinators must grapple with the sample bias that the COVID-19 pandemic might pose, considering their own mandates to protect patients from the intrusion of research into clinical pathways, which might stand for an essential component of care. Whilst clinical experiences and practices are changing, our methodologies start reflecting and recording those changes.
This pandemic, while sudden and harsh, is not the cause of all the current problems in healthcare settings, but a contributor, catalyst and powerful amplifier. The pandemic has exacerbated existing fragilities and reactivated old fault-lines that research on healthcare services and oncology has already shown (Arteaga et al., 2019). With this in mind, we think it is important to resist the temptation to divide the reality in a pre-and post-COVID-19 and instead look to critically reflect on the role of social science and qualitative research specifically for addressing these challenges whilst also reflecting on the emergence of alternative knowledge-making practices.

The covidization of research: the role of qualitative social science research
Aware of the continuity between the clinical, financial and political difficulties already existing in the National Health Service before March 2020, we are cautious to not fall into the "covidization" of all scientific research (Pai, 2020). With restrictions to social life still in place and the number of cases increasing day by day, the pandemic seems to be, if not the only, certainly the dominant interpretative framework to analyse the present, especially in the biomedical field. Embedded at various levels, from funding, research portfolio management, research ethics, study sponsorship, capacity and capability assessments; and through the discretionary decisions of clinical teams, this framework has had significant impacts on the development of research infrastructures and consequently the kinds of knowledge that are produced. A recent consensus-building paper produced by Cancer Core Europe (van de Haar et al., 2020) suggests to "reduce preclinical research activities to a bare minimum" and "stop patient inclusion for clinical studies or trials requiring additional actions and/or visits" (667) -this, in practice, makes translational cancer research an exception. Moreover, in a demonstration of "ethical variability" in clinical care (Petryna, 2005), the authors argue for the need for the selective "adjustment" (that is, de-escalation) of anticancer therapeutic regimes during the pandemic. This involves the hypothesis that the de-escalated treatments could be normalised post-pandemic if the clinical outcomes are not inferior to those of the pre-pandemic treatments. As a prime example of the covidization of research, the published roadmap claims that "[t]he COVID-19 pandemic may offer a unique window of opportunity for retrospective trials, assessing the non-inferiority of de-escalated treatment regimens, which may be difficult to perform under normal conditions for ethical reasons" (670).
The redefinition of research activities during the pandemic intersects with and reinforces pre-existing professional, institutional, disciplinary and epistemological hierarchies. Whether pre-approved studies are funded by the National Institute of Health Research (NIHR; the largest funder of health and care research in the UK) or not, frameworks such as the NIHR Restart determine what is considered "urgent" and hence of essential value (defined as "patient benefit" and health delivery "cost-efficacy"). NIHR Restart then sifts through particular studies in relation to present and potential risks, prioritising certain (clinical, measurable) approaches while stalling others (social, critical) where value is difficult to estimate.
Although such logics of urgency and priority are inevitable and important in contexts of radically compromised capacity, we are keen to advocate for guiding principles that accommodate the kinds of critical social science work outlined above, which examines and bears witness to the social consequences of disease and care, and the ongoing articulation of ethical frameworks across a variegated society. In particular, we have in mind approaches that offer perspectives of a qualitative nature and those that reside beyond the limits of the clinic, which nevertheless offer an essential contribution to the understanding of the social impact and personal stakes that the pandemic has brought onto healthcare services and people's everyday lives. If COVID-19 has surfaced the UK's enduring health inequalities into public awareness, then the organisational streamlining and prioritisation of clinical and biomedical research within the NHS risks, paradoxically, sidelining the social scientific research that can bear witness to the wider social dynamics that are core to COVID-19's uneven effects. At stake in this "covidization" of research is thus both a broader and more nuanced understanding of the pandemic and its effects and the displacement of important work in other arenas that are not explicitly deemed "COVID-related" (Pai, 2020). Indeed, just as the pandemic exposes and is exacerbated by socio-cultural, economic and political disparities, it is critical that qualitative researchers are enabled to document and better understand the social effects of COVID-19 on cancer treatment and care across and beyond the UK.

Looking at the future: Intersections between COVID-19 and the promise and practice of personalised cancer medicine
Important innovations in cancer treatments have been linked to the identification of specific biological markers, allowing for targeted therapies for specific subgroups of patients. It is this kind of stratification practices that are behind the promises of what is commonly called "personalised" medicine. Yet, the COVID-19 pandemic has, in many ways, redirected the "circulation of scientific promises" in personalised medicine that have tended to be attached to oncology and rare diseases (Sturdy, 2017:31).
We know that the impact of COVID-19 on cancer research communities is profound, as funding and public/private investment is squeezed, and human and non-human resources are re-routed to help tackle the virus's effect on society and citizens (see Cancer Research UK Open Letter to researchers). We have seen how laboratory closures, as a result of the national lockdown, slowed down scientific progress thus exacerbating any mismatch between upstream promises in cancer research and their downstream translation into clinical care (see Cancer Research UK researchers lockdown experience survey). As Genome UK: The Future of Healthcare (Department of Health and Social Care, 2020:19) outlined, some of the most exciting developments in early detection involve interval observational studies that track circulating tumour DNA (ctDNA). However, sample collection for such studies are not priorities and involve patients in follow-up; their hospital appointments have been cancelled in recent months. Moreover, even before the COVID-19 pandemic access to clinical trials could be patchy and lacking in patient diversity in places across and beyond the UK (Kerr & Cunningham-Burley, 2015). During the initial months of the pandemic clinical trial recruitment ground to a halt in the UK which meant for many patients a missed window of opportunity to access potentially life-extending drugs.
The current challenge of conducting social science research in the clinical settings means examining the broader social impact of the pandemic on the practices of personalisation are yet to fully materialise, teasing out how the pandemic intensifies micro and macro-level asymmetries of personalised cancer care. As patients navigate an even more uncertain landscape of complex care, the pandemic reminds us of the ongoing, and in fact urgent need to scrutinize the meaning of personalisation. Indeed, the virus continues to demonstrate how a truly personalised approach in healthcare should not be confined to the biological aspects of treatments but must also consider the needs of the patient from a holistic point of view (Day et al., 2016;Prainsack, 2018).

A third "C": The need for critique
While seeking to acknowledge the impact of the pandemic on research and care infrastructures around cancer, we invite caution towards totalising tendencies. The risk of covidizing cancer resembles the #ForgottenC, an online hashtag becoming popular in online platforms among charities and other advocacy groups. Remembering cancer during the pandemic presumes to know and thus recall cancer as a figure being forgotten. We want to call attention to work carried out in clinical and non-clinical contexts that highlights the diverse and unequal resources afforded to people using health services in the UK. We encourage our colleagues to look at cancer as a biosocial phenomenon rather than limiting it to the simplified narrative portrayed as part of charitable fundraising efforts.
Reckoning with a #ForgottenC is to do critical work with longer histories of managerialism, streamlining and efficiency saving in the context of public sector austerity, privatisation, biotech and pharma profiteering, and the degradation of hospital estates. How we remember one C should put to work another: "critique". Critical work involves considerations of our own privileges, biases and limitations, especially our dependencies on the private wealth of charitable organisations, conditions what social science can do within a pandemic. It involves, again, reckoning with our dependencies, antagonisms, and entanglements with biomedicine. Building on our expertise as social science scholars in the field of cancer, we sought to outline what a critical, reflexive and provisional approach to Cancer and COVID-19 may involve.

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Open Peer Review Current Peer Review Status: Version 1
Reviewer Report 26 January 2021 https://doi.org/10.21956/wellcomeopenres.18047.r41896 © 2021 Schmid C. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Christine Schmid
Department of Psychology and Ergonomics, Technical University of Berlin, Berlin, Germany I enjoyed reading the open letter "Cancer, Covid-19, and the need for critique". It is a very wellwritten piece contributing to discussions about the entanglements between Covid-19, cancer care and social science research. The open letter addresses the impact of the pandemic on cancer care, on patient's lives and points out that this current "moment of crisis" reveals a fragmentation in cancer care that already existed before.
However, the main argument, as I understand it, is a call for the importance of -underestimated and neglected within the field cancer research in times of the pandemic -qualitative social science research.
Overall, I think this argument, and in particular its development from the concrete example of the fragmentation of cancer care to the need for critical social scientific debate, works.
However, it might also be this structure that leaves me as a reader missing clarity as to what the authors' main intention or main argument is.
For instance, the description of fragmentation could be elaborated on in more detail, if this is an example for why and how social scientist can contribute to critical research on cancer care. Otherwise, in the end, it is still unclear how this exactly becomes relevant or critical in practice. At the same time, I was wondering, if this reasoning for social sciences as a primarily critical form of knowledge production -without elaborating on its contributions in more detail -reinforces an image of a distanced "critique from outside". Following Latour (2014) this form of deconstructive critique from social sciences is not effective anymore in order to contribute to current social questions. But this might be a follow-up question and not so vital to the letter.
By the same token, I was wondering why the authors did not refer to some more of their own work in order to clarify abovementioned fragmentation -this would additionally support the argument that research should not be divided into pre-and post-COVID-19 research. Also, the examples in the open letter are based on a specific national cancer care context. For me, © 2020 Gainty C. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Department of History, King's College London, London, UK
This open letter is rich and thoughtful. It offers, for one thing, a review of the ways in which the cancer care industry and its actors all along the line -including its frontline physicians and patients -have been impacted by the COVID-19 pandemic. Here, the letter points to accounts of patients whose treatments have been disrupted and whose status within healthcare has changed: from those heavily dependent on the system to those too ill to be treated should they contract severe COVID.
At the same time, the letter points out the dangerous potential for attribution errors during a pandemic, noting that the so-called "covidization" of cancer cuts two ways: in its implication that COVID-19 has actively disrupted cancer research and therapy, it notes the novelty of a once-in-ageneration health event on all aspects of the "regular" system of the cancer care industry . But it also introduces the risk that too much attention to this specialness will paper over what are actually longer-standing continuities, forces or factors attributable to causes outside of COVID-19.
But both of these themes are subordinate to what I take to be the letter's main argument: that those who study cancer from the perspective of the social studies of science, technology and medicine ought to be considered critical players in this discussion -as critical, in fact, as any of the other knowledge-making actors in cancer care -because the factors that they are uniquely equipped to deal with, the biosocial, cultural, economic, political, etc, are just as fundamental to the creation of cancer as any other. In this, the authors are calling for recognition that disease is not just a clinical creation and that as a result the factors relevant to understanding, signifying and managing a disease cannot be limited only to those who experience it clinically.
The authors underscore this point in a variety of useful ways, and I think the argument works by and large, though it remains a question to me whether this is something that the authors feel is specific only to cancer or whether there discussion here is actually more radical, that when we acknowledge, as we publicly do, that medicine and health are more than just clinical entities, it makes little sense to prioritise clinical entities as those suited to define its significance.
Given how potentially important the authors indicate the role of the social scientist is, it feels a bit of a let down that they do not indicate more precisely what it is that the presence of social scientists in cancer's inner knowledge-making circle might yield. The language they use to describe their role is remarkable for its passivity. Reseachers "bear witness to" or are "enable[ed]" to "document and better understand". This leaves a hole at the veritable center of the argument: what is it, besides watching and documenting, that social scientists are able to contribute? The translation from arguing the case from a matter of academic necessity to arguing it as a matter of real-time, real world necessity is not fully described here, even though the real world significance of the authors' work cries out for acknowledgment. What would change if social scientists were in the mix? I wonder if perhaps this omission is a translational one: the difficulty of describing one's significance in terms other than those internal to one's own work is well known. And if so, I wonder whether the letter is not otherwise troubled by this translation, or perhaps by the artefactual remains of what were clearly wide-ranging and dynamic conversations had at the conference in September. Among other things, the discussion of the difficulties of social scientific research in a pandemic feels very specific, yet the letter is not necessarily otherwise specifically about the difficulties particularly attendant with social science research in a pandemic exactly. The situation is similar with the discussion of the NIHR: a very specific reference that feels out of keeping with some of the more thematic points made in the letter, even if it used to make a point about research priorities. And the discussion of personalized medicine, while interesting and thoughtful, also seems awkwardly bent toward the matter at hand. The reference to Steve Sturdy's work here, indeed, feels a bit of a red herring: I read that work as a rich provocation about how to (re)signify personalized medicine. But this section doesn't follow through on Sturdy's notions of bioetch's "promissory economy" and instead almost seems to double down on a slightly more facile notion of personalized medicine that, given the theoretical richness of their account in other places, seems just out of place.
Both of the above can be addressed relatively easily and are not so vital to the letter's main argument. What should be addressed, I think, is the uncertainty attached to the notion of covidization. Initially, covidization seems primed to refer in quite a facile way to research costs. The referenced text focuses on researchers attracted to study COVID whose loss aggrieves the community of researchers they've left; whose help, for lack of expertise, is actually not helpful to those they've joined; and who thus add to a cacophony of scientific voices rather than becoming a part of a single cohesive sensibility about how to think about and what to do about COVID. This rather reductive view (of covidization but also of scientific research, for that matter) feels out of place, and the examples the authors include of the covidization of cancer don't clarify how their meaning of the term relates to this one.
It seems to me that covidization for the authors ultimately seems to signify something to do with an inability to strike a balance between the novelty of the pandemic, at least in our lifetimes, and its non-novelty, both as a historical phenomenon and as a prism onto healthcare in real time. Does COVID represent a change in kind or a change in degree?
If this reading is right, then we are left with some uncertainty about the status of the letter. Is it suggesting something about the attendant and specific difficulties of cancer and COVID, of cancer as a covidized disease, and therefore the need for social scientific contributions? If so, does this contradict the richness of the definition of covidization that the authors provide? Or are the authors saying that now, as at all times, social scientists need to be involved in the study of cancer? And if so, does this mean that their intonation of COVID here is too strong? Some resolution to this conceptual difficulty would be in order. If, for example, it is that COVID has exacerbated and/or laid bare for us what is already true about cancer, then this is certainly worth saying. Whatever their position, greater clarity would help a great deal to bring out the really important message that this letter contains.

Is the rationale for the Open Letter provided in sufficient detail? Yes
Does the article adequately reference differing views and opinions?