Sophie Day presented emerging findings from our sub-study of the RIO Trial to an in-person and online group of trial participants and other people associated with the trial. We have interviewed 10 trial participants twice and a further 15+ participants, non-participants, staff and members of the HIV community. To find out more about this research study, visit the What We Do section of this website.
Sophie Day presented findings from interviews associated with the RIO Trial. She and Will Viney have talked to people living with HIV who have and have not joined the RIO trial as well as members of the community and staff working on RIO. To find out more about this research study, visit the What We Do page of this website
Sophie Day presented findings from interviews associated with the RIO Trial. She and Will Viney have talked to people living with HIV who have and have not joined the RIO trial as well as members of the community and staff working on RIO. To find out more about this research study, visit the What We Do section of this website.
We provided NHS staff and researchers feedback on our work on personalised breast cancer medicine. By refering to current and future publications, we divided our findings based on changes in practices in the last 5 years, the coordination of care and research activities, impacts of COVID-19, and the exploratory involvement of patients and staff in a participatory poetry residency and science cafe series. We would like to thank everyone who attended this feedback session for their participation and, more generally, for hosting our research in the service as part of the ‘People Like You’ project.
Hear the stories of patients and staff at a typical London hospital, told through the written portraits of Di Sherlock
She shrugs off the memory
like a scratchy sweater
or an old skin,
says cancer is one more curve ball
Life’s thrown her way.
The poems are part of the ‘People Like You’ project which sees Di’s collaborators at Imperial College and Goldsmiths University of London investigating perceptions around personalised medicine. The series of 21 portraits explore the ways that preference, need, desire, pleasure and recognition serve as grounds for judging people to be alike.
At this World Poetry Day lunchtime event, the Great Exhibition Road Festival brings Di together with anthropologist Sophie Day to discuss the project and the impact this way of getting to know and profile individuals might inform future approaches to a more personalised approach to healthcare. The event will also feature readings of some of the poems.
This is event is hosted online and is free to attend. Sign up via the Eventbrite page.
A one-day event on the theme of personalisation, presenting research and artworks in health, data science and digital cultures.
11.00 – 13:00 Portraits of ‘People Like You’: Conversations with artists in residence
Introduced by Sophie Day (People Like You).Felicity Allen, Stefanie Posavec and Di Sherlock present their art-work and discuss the themes of People Like You with Lucy Kimbell (University of the Arts London)
13:00 – 14:00 Lunch
14.00 – 15:30 What is personalisation?
Introduced by Celia Lury (People Like You)
What is personalisation, in practice? Sandeep Ahluwalia (Synthesia), Deborah Ashby (Imperial, immediate Past President of the Royal Statistical Society), Jon Ainger (Impower), followed by a roundtable.
15:30 – 16:00 Break
16:00 – 17:30 “Any Questions?”
Introduced by Helen Ward (People Like You)
Timandra Harkness addresses the future of personalisation, putting questions from the audience to a panel including Paul Mason (writer and journalist), Reema Patel (Ada Lovelace Institute), Natalie Banner (Wellcome Trust), and Rosa Curling (Foxglove).
Artists in residence
Di Sherlock’s poetry residence explored personalised cancer medicine and care. As she describes in her Introduction to Written Portraits, her practice involves three stages: conversation, writing and giving back a portrait to the ‘sitter’. She reflects on the categories that emerge through participating, categories with which you might or might not identify and in which you might or might not recognise yourself. Personalising practices fold responses into data and so categories of ‘people like you’ change constantly. She concludes, “I offer the portraits in gratitude and the belief that honouring ourselves and our unique stories is vital to our well-being. The stories here tell of supreme kindness, courage, insight, honesty, laughter, and pain. Everyday and jaw-dropping. There is no such thing as an ordinary life.”
Felicity Allen developed a new series in her Dialogic Portraits work, to consider with her sitters questions of traditional representation (such as portraiture) and ideas of the self that are associated with digital culture. She produced a series of portraits, and made audio recordings with the sitters, both of which form the basis for her 12-minute film, Figure to Ground – a site losing its system. When thinking about how sitters might relate to each other in this Dialogic Portraits series, Flick concludes “I pictured a game of dominoes; tops and tails following an assortment of different possible connections and lines of thought.”
Stefanie Posavec is the artist-in-residence exploring data science and personalisation. Through her data-driven art practice she investigated how stakeholders within Imperial College’s Airwave Health Monitoring Study perceive the ‘people behind the numbers’ who consent to their biological samples and data being used and stored for research. After interviewing Airwave’s staff and participants, she created Data Murmurations: Points in flight a detailed drawn map of the journey a participant’s biosamples and data take through the study, from their initial acquisition in a study clinic to analysis by researchers. Alongside this map Stefanie created a series of drawings that present the various perspectives of study stakeholders from their ‘positions’ within the Airwaves system, showing how their ability to ‘see’ the individual participant within the aggregated data changes depending on one’s system ‘position’.
Di talked to people at Maggie’s West London and Charing Cross Hospital in London who are affected by, and working with, cancer. Her poetry practice involves writing a ‘portrait’ from these conversations. She then gives back a poem. The editing process goes to and fro between Di and the ‘sitter’ until they consider that the portrait is a likeness or resemblance that they also like. All the sitters agreed to share their poems more widely in this collection.
At the launch, we discussed Di’s practice, our wider project, and the experience of sitters. The video also includes the following readings from Written Portraits:
- ‘Vital Conversation’ read by Clive Llewellyn
- ‘Rewilding the Self’ from ‘The Art Class’ read by Lin Sagovsky
- ‘The Three Musketeers’ read by Chris Barnes.
- ‘Everyday Heroines’ read by Susan Aderin
Written Portraits is now available online, with audio and commentary.
We’re drowning in an ocean of data, or so the saying goes. Data’s “big”: there’s not only lots of it, but its volume has allowed for the development of new, large-scale processing techniques. Our relationship with governments, medical organisations, technology companies, the education sector, and so on are increasingly informed by the data we overtly or inadvertently provide when we use particular services. The proverbial data deluge is large-scale—but it’s also personal. Data promises to personalise services to better meet our individual needs. Data is often construed as a threat to our person(s). Not every person predicated by data is predicted the same. The intersection between data and person isn’t fixed: it has to be figured.
This conference brings together an interdisciplinary group of researchers to explore how the person—or persons, plural—are figured in/out of data. Figuration might encompass any or all of processes of representation, calculation, analogisation, prediction, and conceptualisation. It cuts across multiple scales, epistemological modes, and disciplinary areas of enquiry. It tackles problems that cross into disparate disciplines. Our proposition is that it can help us think and study our increasingly datified present.
What methodological, conceptual, and/or empirical potential do ‘figurations’ offer to researchers working at the intersection of the person and data today? Over two days, more than 50 presenters and 4 keynote speakers will address how the ‘figure’ and its variants—figuration, figuring, to figure, and so on—is being developed and used in disciplines including the medical humanities, the social sciences, media studies, art history, literary studies, philosophy, science and technology studies, urban studies, and geography.
To register, please follow this link.
- Professor Wendy Hui Kyong Chun, Simon Fraser University
- Professor Jane Elliot, University of Exeter
- Professor John Frow, The University of Sydney
- Professor AbdouMaliq Simone, The University of Sheffield
Where and when:
9.30am – 6pm, Monday 16 and Tuesday 17 December, 2019
Professor Stuart Hall Building, Goldsmiths, University of London, 8 Lewisham Way SE14 6NW
The conference programme will be available shortly. Keynote addresses will take place at 10am and 5pm each day.
Registration is free. Lunch and coffee will be provided for attendees. When registering, we ask that you please indicate if you’re only attending one of the two days or, if your plans change, that you cancel your registration as soon as possible – we don’t like wasting food!
Figurations is organised as part of the ‘People Like You: Contemporary Figures of Personalisation’ Project, which is funded by a Wellcome Trust Collaborative Award (205456/Z/16/Z). It is organised by Prof. Celia Lury and Dr. Scott Wark from the University of Warwick’s Centre for Interdisciplinary Methodologies, in collaboration with PLY researchers from Goldsmiths, University of London and Imperial College.
To register, please follow this link. If you have any questions about the conference programme, please email Scott Wark: S.Wark@warwick.ac.uk. If you have any questions about Goldsmiths, including questions about access requirements, please email our project administrator, Yael Gerson: Y.Gerson@gold.ac.uk
Have you ever been told ‘People like you like things like this’? Recommendations that come in this form are examples of personalisation.
Personalisation practices address you as an individual with unique tastes and preferences, whilst simultaneously saying you are similar to other people. Maybe you are ‘like’ someone else because you ‘like’ the same things. Maybe you are like others in other ways: you have the same interests; you share the same health condition; you like cats, not dogs; you don’t like being labelled. Maybe you’re not like others at all – maybe personalised services feel anything but personal to you.
How do you imagine ‘People like you?’ What are your experiences of personalisation? When do they get it right and how do you respond when they get it wrong?
Share an image, text, data-based or number-based entry on the theme of ‘People like you’ for a chance to win. Let us know which entry you like best!
First prize: £250; second prize: £75; third prize: £50.
People’s Choice prize: £100
The competition opens on Monday the 4th of March and will close on the 30th April. Winners will be announced on Friday 31st May.
To enter, please visit the Competition website
People Like You is a research project funded by the Wellcome Trust (grant no: 205456/Z/16/Z).
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.