In recent years we have seen a sharp increase in techniques, practices, and ideologies that seek to ‘personalise’ products and services. ‘People Like You’: Contemporary Figures of Personalisation is a project that has received funding from the Wellcome Trust to track what this move towards personalisation really means.
While there is a rapidly growing literature on personalisation in medicine (Prainsack 2017; Dickenson 2013, Hedgecoe 2004, Hood and Friend 2011, Prainsack 2014, Tutton 2014), social care and education (Leadbeater 2004, Needham 2011), and marketing (Turow 2011), there are few attempts to establish the broad cultural significance of these new practices. For this broad cultural significance to be measured, we are investigating personalisation in digital culture, medicine and healthcare, data science, and participatory arts practices.
We are also eager to engage with academics, policy makers, technologists, and those in private industry to learn about common patterns and differences in style and practice. Our first Networking Workshop allowed an international group of researchers to meet for the first time, to explore personalisation in its broadest definition and outcome.
Below is a summary of presentations and discussions. For full detail of the day, please see our booklet.
The first session introduced ‘People Like You’ in terms of three key concepts that the group has been considering in its theorisation of personalisation. Sophie Day explained how we were working with the interrelated concepts of ‘tracking’, ‘likeness’ and ‘context’, and how all can be at play when something or someone becomes ‘personalised’. Each of the project members gave examples of how tracking, likeness, and context informed their case studies in digital culture, healthcare, data science, art and art practice. You can read more about those case studies here.
The next session began with Sarah Cunningham-Burley (Edinburgh) introducing the project Cancer and Society in the 21st Century (Leeds/Edinburgh), which looks at how the molecularisation of disease, as promise and as practice, is affecting patient experience across the health system. Cunningham-Burley highlighted what Mike Fortun has described as the ‘new zones of intensities’ in post-genomics affects how patients form identities and collectives, understand risk, responsibilities, and expectations towards care, research, and advocacy.
Sarah’s introduction to the project found an interesting series of international contrasts with Mette N. Svendsen’s (Copenhagen) work on personalised medicine in the Danish welfare state. Svendsen challenged us to think about how the singular ‘I’ of molecular personhood relates to the ‘we’ of welfarism, the ‘we’ of scientific community and discovery, and the ‘we’ of data use and sharing. Two lines of thought that had animated public debates in Denmark in recent years: first, around substitutes and substitution, the sense of threat that gets attached to the management of genomic as opposed to other kinds of data; second, the question of storage and how this produces pressures to care for and standardise ‘personalised’ data.
The last presentation was given by Giskin Day (Imperial/King’s), whose work on patienthood and gratitude focuses on exchanges between clinicians and patients. This resonated with other presentations’ in this panel’s reflections on the ways that healthcare systems are being datafied and automated. In systems aspiring to personalised care, there remains important inter-relationship between the digital exchanges and face-to-face encounters. For Day, this raises the question: are patients given the opportunity to be grateful? And further, can patients have this gratitude acknowledged? Addressing this question is key to what Day calls ‘bespoke medicine’.
The conversation that emerged from this panel raised familiar anxieties about who gets to participate in medical personalisation, how we might avoid personalisation altogether, or what the outcomes of personalisation might be beyond the transactional imaginary of atomistic individuals. How do we picture and map the systems, networks, and assemblages of people, data, concepts, classifications, and relations? Resisting programmed inequality calls us to have a far clearer understanding of the whole – persons and populations – from which exclusions are made.
Matías Valderrama Barragán opened the final session with an overview of the work done by the Smart Citizen Project headed by Martín Tironi at the Design School of the Pontificia Universidad Católica de Chile. Valderrama Barragán’s presentation ranged across a number of projects tracking the collection and use of data in Santiago. By focusing on the multiple services used to gather the data of, for instance, cyclists in Santiago, Matías highlighted what he and his colleagues refer to as the creative and even subversive ‘idiocy’ expressed by participants in ‘smart’ projects. Data, his presentation reminded us, can often be put to other uses by those who produce it, redefining what it means for a city or a space to be designed ‘smart’.
Valderrama was followed by Zsuzsanna Vargha (ESCP Europe, Paris) speaking on the recent history of the development of personalisation techniques in the business world. Contrary to claims that personalisation has been driven by new developments in big data, Vargha argued that it can be traced to the emergence of Customer Relations Management technology in the 1990’s in various industries, and its uptake by finance companies in the 2000s. Vargha’s focus on the ‘middleware’ provided compelling background to the kinds of processes that are being investigated by People Like You. Her corollary argument, that personalisation doesn’t ‘depersonalise; interactions between businesses and consumers but is often used to shape interpersonal interactions—by, for instance, telephone-based sales representatives—added a layer of nuance to some of the questions pursued by other participants in the event. Health also employs middleware. How has it helped shaped personalisation in this sector?
The final presentation from invited speakers was given by Francesca Toni (Imperial College) Co-Investigator and Technical Director of the EPSRC-funded ROAD2H project. Toni outlined this project’s development of clinical decision-making support systems, which use Artificial Intelligence techniques in conjunction with patient data and clinical guidelines to assist clinicians in the delivery of services. Toni and her colleague, Kristijonas Čyras, brought computer science expertise to the discussion of how personalisation might be implemented in health contexts. The system they are using will be designed around a form of AI that employs argumentation to optimise its outcomes. This raised pertinent questions: if this system is used by clinicians, how much information should be supplied to patients? What kind of resistance might be expected from, for instance, nurses, if this system was used to help scheduling? Can it be ‘personalised’ for the user as well as the patient?
Session 4 (Group Discussion)
The final session provided an opportunity for all participants to collectively reflect upon themes that resonated across presentations, and to propose ideas for future collaborations. The following points were raised:
- In addition to tracking, likeness, and contexting, ‘participation’ was proposed as a fourth technique of personalisation or indeed, as some argued, the grounds for personalisation.
- If participation provides the grounds for participation in personalisation, should it be distinguished from the practice of ‘recruitment’?
- If personalisation creates novel experiences of tracking or ‘liking’ through recursive data use, remaking contexts for participation, then should we be developing similarly adaptive collaborative methods?
- We heard a lot about unsuccessful personalisation, but what does successful personalisation look like? And can failed personalisation ever be positive?
- Personalisation involves being part of a vague whole that is being constantly and recursively rearranged: we don’t know what else is in it, so how do we know what the whole is?
- Further topics included data ownership, how persons were being redefined by data or how personhood was used to define data; this related to metaphors of storage (biobanks versus bio-libraries, and related notions of ‘public’ versus ‘private’ good). It is important for collaborative research to understand how these concepts and metaphors are shaped differently in different national contexts.
- Certain organs, tissues, and molecules are invested with more cultural value than others when it comes to putting persons into personalisation: what are emotional and symbolic values invested in strings of DNA and what gives them their power and precedence?
This Network Workshop gave us an opportunity to learn how researchers working across the sciences are engaging with the subject and practice of personalisation. We look forward to announcing our future events.