An exhibition of work by internationally exhibited and award-winning artist Tom Corby whose poignant images combine quantitative medical/clinical data describing the artist’s Multiple Myeloma* with the qualitative data generated by his personal experience of living with cancer.
NIHR Biomedical Research Centres in Oncology Workshop, Royal College of Nursing
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.
The recent announcement by the Secretary of State for Health and Social Care outlining aspirations to genome sequence 5 million people over the next 5 years will come as no surprise to most of us. We have known for some time that following the official completion of Genomics England 100,000 Genomes Project (100k GP), there would be a concerted effort to roll out Whole Genome Sequencing (WGS) within the NHS clinical infrastructure. The details of this ambition were formally outlined within the Chief Medical Officer, Sally Davies’ 2016 annual report Generation Genome, and later solidified at the 2018 Manchester Health and Care Innovation Expo by Chief Scientific Officer for England Sue Hill, who announced a National Genomic Medicine Service.
However, the Science and Technology select committee on Genomics and Genome Editing in the NHS voiced critical concerns regarding the translation of 100k GP into the NHS, and many clinicians have been vocal in their critique of the clinical performance of 100k GP and planned measures to translate results from the project into the NHS without adequate evidence and audit. Moreover, the infrastructural impacts of the reorganisation of services associated with the launch of the National Genomic Medicine Service, particularly the genomic laboratory hub model, have been notably absent within public debate.
Our belief is that as a multidisciplinary community that has studied and reported on the development, politics and practice of genomic medicine in the UK and elsewhere, we are well placed to shed the necessary critical light on both the conduct and performance of the 100k GP, as well as the prospect of the current model of a National Genomic Medicine Service within the NHS.
There has recently been a concerted campaign by those promoting the 100k GP and the development of the National Medical Genomics Service to win support and resources; including the recent BMJ paper by the Genomics England Consortium (Turnbull et al, 2018) and public events such as; ‘Transforming Medicine through Genomics Conference’ held on November 15th; and the ‘Next steps for genomic medicine in the NHS – regulation, challenges for adoption and priorities for research’ meeting held on 20th November this year. In order to counterbalance this and ensure a fully informed,
open public debate on the costs and benefits of the wholesale adoption of WGS in the NHS we think it is timely that our community organise a critical assessment and response.
We invite participation at a small focused workshop to be held at the Institute for Science, Innovation and Society at the University of Oxford as a way to gather expertise and discuss our experience of the problems, politics and promise of genomic medicine in the UK. The workshop will be held over 2 days and will cover four key questions:
How is whole genome sequencing being deployed within clinical-research practice across a variety of contexts in the UK?
What are the practical clinical consequences of the development of a Genomic Medicine Service following the Genomics England model?
What political and governance concerns have arisen from both the practice and promise of the 100,000 Genomes Project and the subsequent development of the Genomic Medicine
What considerations should be made for the implications of a Genomic Medicine Service Beyond the clinical setting, in both the research and commercial sectors?
Participants have been invited to explore these questions through open discussion across five sessions outlined below, with the possibility of producing a joined output serving to provide critical insight at a time when the world is looking to the UK for experience and best practice.
The complexity of genomic information presents challenges for health care professionals, patients and their families as they make meaning from risk information and negotiate the future. Improving genetic literacy and the effective communication of information only partially addresses the contextual way in which people make sense of information and its relevance for their lives.
This session will draw together current social research in this area, as genomics enters the clinic, through trials as well as standard of care, in order to understand the ways in which genomic knowledge is taken up in different settings. The session will enable attendees to learn: How patients are engaging with genomic information as they confront this during their cancer journey How patients and health care professionals use this information within the range of decisions that are made during care How we can create approaches to communication and genomic literacy that are sensitive to the diverse contexts and needs of patients How social scientific research can enrich understanding of the practice of genomic medicine in relation to cancer.
“People Like You”: Contemporary Figures of Personalisation is a collaborative, interdisciplinary project that is exploring emergent practices of personalisation in medicine, digital culture, and data science. We argue that during the past decade innovations in recommendation, targeted commercial services, new practices of self- and collective-representation invite us to receive personalised care and education services, post selfies, and travel on trains and planes at personalised prices. This panel will show how emerging conceptions of the person increasingly resemble a statistical ensemble of correlations rather anything an individual might recognize as him or herself. If this is the case, then we must ask what sort of ‘person’ is being engineered and what forms of personification are being deployed to make these practices possible. Market institutions now rival the state in their use of actuarial techniques to track, sort and classify individuals with an increasing variety of forms of participation, supplementing established practices of surveillance. At the same time, with its paradigmatic address to ‘people like you’, personalising practices are part of a politics of representation – one in which the similarities and differences established between individuals is at issue. This panel will discuss how emergent practices of personalisation and personification interact in commercial, digital and medical cultures.