What happens to the ‘patient’s voice’ when it participates in the creation of biocapital via digital health platforms? What is the significance of Olivia Banner’s concept of ‘communicative biocapitalism’ in the era of the Covid-19 data app? Lise Grønvold engages with these questions in her review of Banner’s monograph.
Sometime in June 2020, my dad felt an itching in his throat and left work immediately, stopping on his way home to get a Covid-19 test. I met him in the kitchen where he warned me to stay far away from him. He wouldn’t give me any more details because he needed to do something on his phone first. After a minute of activity, he explained: he was filling out his daily questionnaire as part of a Danish study he had been participating in. The study was conducted via an app, and every day of the 100-day trial period it asked him whether he had any of the known Covid-19 symptoms, and if yes, if he had had a test done. For the first time, and not without a little satisfaction at accomplishing something amid all of the worry, he reported his symptom and his test on the app.
He was lucky; the itching in his throat stopped after a few hours. His test was negative, and we could all relax. That was the only time he had to report any symptoms on the app’s daily questionnaire. But all around the world, millions of people have been doing similar Covid-19-related digital reporting since March 2020, some as part of scientific studies and others on governmental or private platforms. In the UK, too, the first tracking app to be recommended by the NHS was the ZOE Covid Symptom Study app, which was based on a similar model of daily questionnaires. Even though the NHS moved to their current app, the NHS COVID-19 app, which is based on the Google/Apple software that uses Bluetooth technology to track the movements of users, the ZOE Covid Symptom Study still boasts over four million users.
The Covid Symptom Study still encourages its users to fill in the daily questionnaires and has recently launched a new initiative where schools can sign up and ask the parents of students to fill out these questionnaires too. The company behind the Covid Symptom Study, the healthtech startup ZOE, got in trouble this October when it sent out an email to all the users of the app promoting its collaboration with a fashion brand founded by Samantha Cameron, wife of the former prime minister David Cameron. The terms and conditions state that users’ data cannot be used for any commercial purposes. Even if all of the proceeds from the masks made by Cameron’s company went to research, many users were rightly outraged over the marketing value of the collaboration for the fashion brand. The company apologised but maintains that what it did was legal.
Digital health is complex, as this brief foray into the world of daily questionnaire-based Covid apps demonstrate. It is a tangle of good intentions, unpaid labour, unclear commercial links, large amounts of user-generated data, and concentrated profit-creation. Many people are happy to donate their unpaid labour to help science, especially in the current moment; after all, a minute per day is very little time to spend if you can help curtail a pandemic. Doing something—anything—can help provide a sense of agency amid so much powerlessness. I looked through all of the reviews for the Covid Symptom Study, and the most common complaint was that there weren’t enough questions and that the response options weren’t detailed enough. This may attest to users not finding it a strain, but it also speaks to the total normalisation of the labour we do on apps and online. Browsing web shops, using a fitness tracker, or creating content on social media–all generate data (and thus, in the majority of cases, profit) for someone else, but we rarely think of those activities as labour. Only a couple of people mentioned the labour involved in filling out the daily questionnaire for the Covid Symptom Study, describing the app as having become a chore or complaining about what they experienced as invasive additional questions on menstrual cycles, eating habits, and weight. But although the majority of the reviewers were happy with the app, recent work by e.g. Rikke Torenholt, Lena Saltbæk, and Henriette Langstrup has shown that even filling in a short questionnaire can require significant physical, mental and affective labour (Torenholt et al. 2020). Even if perceived positively, this labour is donated for free; by contrast, it is not clear how much ZOE is paid for their services with the Covid Symptom Study, but according to TechCrunch, the company has received $27 million in venture capital from investment companies whose business model is based on getting that money back manifold.
Olivia Banner’s Communicative Biocapitalism (2017) is a recent contribution to the study of digital health, and even though it was published before most people knew what a coronavirus was, it has much to say about the current situation we are in and the new digital health initiatives so many are participating in. In her study, Banner looks at the paradox of the patient voice and the new markets and industries that have sprung up to exploit its value. Analysing online patient platforms such as PatientsLikeMe, she shows how health-related online platforms encourage patients to participate by invoking the desire to help others and advance science, while at the same time selling the labour and data of patients to pharmaceutical companies. Banner reminds us to be aware of the normalisation of free labour in the context of health and illness in the age of social media, and to consider how we can appreciate the benefits of approaches that centre the patient’s voice while remaining critical of the industries that are founded on extracting a profit from it.
Banner builds on Jodi Dean’s (2005) concept of communicative capitalism, which describes how communications technologies like social media and other digital platforms monetise communicative exchanges. Rather than the content of the individual contributions, it is the sheer volume of continuous communication that these companies derive profit from, and they therefore have the incentive to continuously increase the circulation of messages, comments, reactions, and data. As Dean observes, these technologies generally proclaim that they advance democracy, widen access to information, and enable free discussion, ‘but instead of leading to more equitable distribution of wealth and influence, instead of enabling the emergence of a richer variety of modes of living and practices of freedom, the deluge of screens and spectacles undermines political opportunity and efficacy of most of the world’s peoples’ (2005:55, qtd. in Banner, p. 10). Banner situates digital health within communicative capitalism, and joins it to the concept of biocapitalism coined within science and technology studies, which describes the industries that generate profit from parts and functions of human bodies. The assemblage communicative biocapitalism is Banner’s term for the markets based on digital health-related communicative capitalism. Banner is particularly interested in how online communications that are established as a response to issues not resolved in the US healthcare system (e.g. adequate patient support) end up generating profit for digital health companies; in other words, how ‘the dysfunction of our health care system benefits communicative capitalism’ (12).
The questions Banner asks about online patient community platforms in Chapter Two could also be applied to apps like the Covid Symptom Study. She asks how self-reporting apps engender specific types of normativity through their formulation of questions, answer options, the symptoms they mark out as significant, and the scales they provide for describing the severity of these symptoms. (The daily question asked by the Covid Symptom Study is ‘How do you feel physically right now?’ with the response options ‘I feel physically normal’ and ‘I’m not feeling quite alright’.) How do they discipline their users as medicalised subjects? Do they engender hypervigilance in their users through the daily reporting? And crucially, how does the group of users who report on their physical well-being daily map onto the general population—are particular groups over- or underrepresented, and what are the consequences of this for the data generated?
As Banner writes, the current prevalence of industries making money from the patient voice is in many ways directly linked to the historical work of the medical humanities and associated disciplines: ‘The patient’s voice, finally accorded respect after decades of hard work by bioethicists, medical humanists, and health activists, serves as free labor for private corporations, with few protections given to the individual’s voice, and with no choice about its entry into privatized medical research’ (2). Banner’s book is a challenge to the medical humanities to engage with the financial realities of digital health and their own responsibility within an increasing commercialisation of the product they have been part of creating, the ‘patient voice’. ‘What are the ramifications,’ Banner asks, ‘for the fields that were initially developed to nurture and honor that voice, narrative medicine and medical humanities in particular, as the patient’s voice is articulated within biocapitalist logic?’ (2). Engaging with the concept of the patient voice without also engaging with the commercial interests that promote and benefit from it, is a choice that ends up supporting those commercial interests.
The most interesting difference between the platforms Banner analyses and the apps that have proliferated during this pandemic is their target audience. Most people who live with chronic conditions are deeply familiar with this kind of data work: labour that includes filling in forms, submitting data, participating in studies, monitoring personal symptoms, and filling out questionnaires. For people who have not had much contact with a healthcare system before now, filling out the short daily questionnaire or even downloading a Bluetooth-based tracking app is a tiny, if entirely voluntary, window into the data work and surveillance often asked of these patients. From the first generation of questionnaire-based Covid-19 tracking apps to those we are yet to see, companies and governments toe the line on what kinds of labour can be solicited in the name of health and illness. During this pandemic, we are all potential patients and carers: we have all either had it already (and may yet discover consequences from having contracted it), have it now, may contract it in the future, or know people who may. Currently, we all have a potential ‘patient voice’ and that makes this particular moment an opportunity to delve more deeply into what that is worth and who stands to benefit from it.
Banner, Olivia. 2017. Communicative Biocapitalism: The Voice of the Patient in Digital Health and the Health Humanities. Ann Arbor: University of Michigan Press.
Dean, Jodi. 2005. Communicative Capitalism: Circulation and the Foreclosure of Politics. Cultural Politics,1, 1: 51–74
Torenholt, Rikke, Lena Saltbæk, and Henriette Langstrup. 2020. Patient data work: filtering and sensing patient‐reported outcomes. Sociology of Health and Illness, 42, 6: 1379-1393
Lise Grønvold is a CHASE-funded PhD student in the Department for English, Theatre and Creative Writing at Birkbeck, University of London. Her thesis focuses on the themes of work and productivity in contemporary Anglo-American writing about chronic illness.