Symposium, AIDS Impact 14th International Conference London, 29-31 July 2019.
STI and HIV 2019 World Congress, Vancouver, 14-17 July 2019.
Pre-Congress Symposium on Phase Specific Strategies for STI and HIV Control Redux: Resurgence, concentrations, networks, key populations, and magic bullets, Vancouver.
16-17 December, 2019, Goldsmiths, University of London
Abstracts due: July 1st, 2019. Submit here.
Professor Wendy Hui Kyong Chun, Simon Fraser University
Professor Jane Elliot, University of Exeter
Professor John Frow, The University of Sydney
Professor Susanne Kuechler, University College London
Professor AbdouMaliq Simone, The University of Sheffield
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 increasingly characterises what it means to be a person in the present. 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.
The aim of this conference is to bring together an interdisciplinary group of researchers to explore how the person—or persons, plural—are figured in/out of data. The figuration of a person 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 the conceptual language of ‘the figure’ and its variations—figuration, figuring, to figure, and so on—can help us to apprehend what the person is and how it is processed in the present.
We invite proposals for 20-minute presentations that take up or respond to the question of how the person is figured in/out of data. We are interested in presentations that address the conceptual, methodological, analytical and/or empirical challenge of figuring the person in the present. Conversely, we are also interested in papers that take up the concept of the figure—broadly construed—as an heuristic for producing knowledge about the constitution of person(s) in the present.
Our proposition is deliberately interdisciplinary. We encourage proposals from researchers working in disciplines for whom the figure is central. These might include, but are not limited to: the social sciences, art history, media studies, the medical humanities, literary studies, philosophy, science and technology studies, urban studies, or geography.
The themes that papers might address could include:
- The figuration of person or persons in/out of data;
- Techniques of personalisation and the figuration of the person or persons;
- Approaches that address the interrelation of visual, numerical, statistical, metaphorical, and/or philosophical modes of figuring the person or persons in the present;
- Conceptual languages for apprehending persons in relation to data—e.g. the subject, identity, user, data double, individual, dividual, etc.;
- The relationship between collective categories and/or category production—like persons, population, distributed reproduction, homophily, etc.—and techniques of figuration;
- Figure as a concept for thinking gender in, e.g., science and technology studies;
- The art-historical/psychological/media-theoretical concept of “figure/ground” and persons/data;
- The relationship between visual and numerical modes of figuring and the constitution of persons;
- Literary/linguistic uses of figuration in e.g. metaphor, analogy, simile, the icon, etc. in relation to the person or persons and data;
- Figuration as a means of thinking the relationship between image/text/number or media and code;
- Related concepts—like the diagram or pattern—as complements to or substitutes for the figure;
- Conceptualising figuration in relation to resemblance, similarity, seriality, difference, etc.
Please submit abstracts of 300 words, including your institutional affiliation(s) and a short biography (a line or two is fine), via the online form at this link. The deadline for abstract submissions is July 1st, 2019.
Please also note that we have a small budget for bursaries to assist graduate students and early-career researchers with travel costs. These will be awarded based on need and more details will be advertised shortly.
If you have any enquiries, please direct them to Scott Wark at S.Wark@Warwick.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).
The biomedical ability to detect specific molecular features of tumours is driving clinical innovation towards more precise diagnoses and more effective treatments by way of “stratification”. These innovations inspire new hopes for more effective and targeted treatments with fewer side effects. However, they also provoke major dilemmas around individual and population-wide treatment decisions, equity of treatment access, and the social formations of care. Current approaches in cancer care thus re-articulate forms of biological and social stratification, with important implications for patient experience and biomedical knowledge.
This one day symposium brings together scholars from a range of social science disciplines to consider the social consequences of these innovations across a number of different sites around the world. Presentations will reflect on the ways in which contemporary oncology is becoming reconfigured at various levels by the practices of disease stratification and its promise of improved health outcomes for those affected by cancer. Further discussions throughout the day will be led by senior academics with expertise in historical and anthropological approaches to cancer:
Dr Sophie Day, Professor at Goldsmiths, University of London
Dr Maryon McDonald, Fellow at Robinson College, University of Cambridge
Dr Carsten Timmerman, Senior lecturer, University of Manchester
The event is free, but tickets must be booked in advance through Eventbrite. Limited bursaries are available for post-graduate students travelling from within the UK. Please contact us directly to request a bursary, outlining your research interest and approximate travel costs. Lunch and refreshments will be provided throughout the day.
This event is supported by the Foundation for the Sociology of Health and Illness. For further information or to request a bursary, please contact Ignacia Arteaga at email@example.com.
Academic Brands workshop, UC Davis
National HIV Prevention Conference, Atlanta, Georgia. A Debate with Dr Jonathan Zenilman, Chief of Infectious Diseases and Professor of Medicine at Johns Hopkins, moderated by Dr Gail Bolan, Director or the Division of STD Prevention at the US Centres for Disease Control and Prevention.
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.
One day launch event to a new seminar and workshop series across 2019-2020, sponsored by Centre for Personalised Medicine (CPM), St. Anne’s College and NIHR Oford BRC Partnership for Health, Wealth and Innovation
The idea behind personalised medicine is both simple and powerful: delivering the right treatment to the right patient at the right time. Realising these visions requires both improved scientific knowledge of human disease and illnesses, but also forging of new forms of dialogue, relations and partnerships across often complex landscapes of contemporary healthcare systems. The aim of this new event series is to identify major social challenges surrounding personalised medicine, and develop new knowledge, tools, and solutions about how they might be breached. Every six months an event will be held at St. Anne’s College focusing on a “grand social challenge” of personalised medicine, including the ethics and social practices of data sharing, university-industry-NHS partnerships, and challenges of achieving disruptive changes at scale in healthcare systems. Our inaugural event on 21st March 2019 brings together renowned speakers from various backgrounds to reflect on what they consider acute challenges surrounding realisation of personalised medicine in healthcare systems, drawing on their expertise and experience from the social sciences and humanities, clinical research, industry, healthcare professions, and health policy. We particularly welcome patients and the public to the event.
We are pleased to announce the winning entries in the competition on the theme of People Like You.
The three judges were Celia Lury, Martin Tironi and Nina Wakeford. They were impressed by the range of ways in which the entries responded to the provocation posed by the competition.
The ‘People Like You’ project team want to thank everyone who submitted an entry. They have helped us think about what personalisation means and will inform later stages of our research. We will be writing a blog to describe the process of designing and running the competition.
You can see the winning entries on our competition website
Many congratulations to all of our winners:
Carolyn Meyer – First Prize
Sophie Wood – Second Prize
Clement O’Donovan – Third Prize
Mariam Menteshashvili – People’s Choice Prize
On July 9, 2019, the first workshop of the Interdisciplinary Project “Algorithmic Identities: Issues and reactions to the collection of digital data and algorithmic inferences in everyday life” was held at Senate House, the University of London. This project is directed by researchers Martín Tironi, Matías Valderrama and Denis Parra of the Pontifical Catholic University of Chile, in close collaboration with the academics of the Centre for Interdisciplinary Methodologies of the University of Warwick Celia Lury and Scott Wark, who are studying personalisation in digital culture in the project “People Like You: Contemporary figures of Personalisation”.
The “Algorithmic Identities” project starts from the fact that the Internet and digital innovations of all kinds have opened new ways of configuring, knowing and representing people. If in the ‘90s there was a socio-technical imaginary of the Internet as self-enclosed cyberspace where anonymity and experimentation with multiple virtual identities prevailed, with the growing ubiquity of sensors, smartphones and various algorithms in everyday life, it seems that now we are in a scenario of continuous de- and re-identification and the algorithmic profiling of people. Our identities are increasingly translated into bits of information that are processed to infer and predict individual traits and consumer preferences. Digital platforms such as Google, Spotify or Amazon continually personalise and recommend content and products to us based on complex and commonly inscrutable and opaque algorithmic systems that seek to predict our tastes and desires with great accuracy. In response, artists and activists have problematised the increasing surveillance carried out by these platforms, demanding more data protection regulations and developing tactics to disrupt, obfuscate and resist the technologies of identification and their possible discriminatory or harmful consequences. However, inside this debate, few studies have addressed how people interpret, feel and understand the processes of algorithmic profiling and recommendation, leaving it uncertain how algorithmic systems operate and intervene in everyday life and unclear how people respond to the kinds of subjectivities or individual identities proposed to them by these algorithmic processes.
This project seeks to study how personhood is configured in times of algorithms and digital data. From an interdisciplinary approach at the intersection of computing, sociology and design, the project’s general objective is to analyse how people react and thematise the extraction of digital data and algorithmic predictions about their identity. For this purpose, the project is developing an experimental design intervention, combining a qualitative approach with digital data. Considering the opaque and inscrutable algorithmic systems of large digital platforms, the project will conduct an experimental intervention by designing a prototype of a smartphone app called Big Sister that can collect social media data or free texts uploaded by volunteer participants from Chile and the United Kingdom to provide inferences about personality and cultural preferences. Through an interactive visualization, the volunteer participants will be able to explore their profiles and play with the analysed data. Through in-depth interviews with volunteer participants based on their experiences with the results and algorithmic predictions of the app, we will analyse how people experience, interpret and problematise the daily generation of digital data, enabling a better understanding of how our digitally mediated identities are shaped and staged in contemporary societies.
In the workshop, we had the opportunity to discuss the design and development of the Big Sister app, as well as make methodological decisions about the interviews of digital traces, which will be carried out towards the end of 2019. Along with this, we thought about different ways of conceptualizing personal relationships with data and algorithms, from colonialism to kinship, and future steps of the project were defined, as ways to strengthen our Chilean-British collaboration. To know more details of the research project and stay alert for their news, you can access here: http://plataformasdt.cl/proyectos/identidades-algoritmicas/; and https://peoplelikeyou.ac.uk/.
This project is funded and supported by the “Interdisciplinary Research Competition 2018” of the Vice-Rector for Research (VRI) of the Pontificia Universidad de Chile and the People Like You project, a Collaborative Award in the Medical Humanities and Social Sciences by the Wellcome Trust Foundation, and the Fondecyt project N°1180062: “Datafication of urban environments and individuals: an analysis of the designs, practices and discourses of the production and management of digital data in Chile”.