I have collected all the presentations in the same post to summarise the information. Thank you very much indeed to all the participants for these inspiring and wonderful days. I would like also to express my gratitude to Internet Interdisciplinary Institute (IN3) for its support.

Workshop: Innovative health technologies: health systems in transition
Supported by: Internet Interdisciplinary Institute (IN3)
Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary
Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and
Technology Studies Unit, Department of Sociology, University of York)
Data: 26th and 27th November
Place: Meeting room -1A , UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3,
08860 Castelldefels (Barcelona)

26th November

• Andrew Webster - Innovation in health: a social science perspective
• Michael Morrison - ‘Measuring Innovation - a brief introduction to
  the REMEDiE project’
• Laura Machin - Cord blood banking: initial observations
• Mariann Hardey - Private medical care and the Web
• Eulàlia Hernádez - Providing resources for caregivers trough the
  Internet.
• Flis Henwood - ‘Health-e discourse? Engaging the community in ehealth
  developments for obesity self-management’
• Sue Ziebland - Knowledge is Power? The role of health information

27th November

• Imma Grau - Studying Virtual Communities for patients with chronic
  illnesses, in Forumclinic
• Daniel López - Reframing telecare: an ethical discussion concerning
  ageing-in-place, independence and care.
• Darren Reed - Performativity of Data
• Michael Hardey - Consuming professions: user-review websites and health services.
• Francisco Lupiáñez-Villanueva and Michael Hardey - Health professionals, the Internet and Internet informed patients.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Darren Reed - Performativity of (Bio)Data

In this talk I will introduce the Public Life of Data project application and outline some early thoughts on the SATSU contribution. The application is concerned with the public and ‘lived’ nature of new forms of data in various realms. The SATSU thread is concerned with the biomedical field and specifically the nature of data in areas such as assistive technology and public biomedical information. By drawing on an earlier case study of the installation of domestic assistive technology, I will start to sketch out notions of the “performativity” and “bio-graphy” of data in this environment with reference to an analytic schema built around the three elements of ‘public’/'life’/'data’

Darren Reed

Sociologist who has worked within Human Computer Interaction and Science and Technology Studies for nine years. He looks to combine sociological theory and methods to practical ends, and is currently developing the conceptual area of a ‘performativity of age and technology’ to provide a major underpinning for continued work on the meaning and practices surrounding older peoples use, or non-use of technology, so as to better understand the barriers to the application of technology to care and support situations. These endeavours also incorporate stakeholder relationships, social structures and the ‘social construction’ of technology.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Daniel López presentation: Reframing telecare: an ethical discussion concerning ageing-in-place, independence and care.

Telecare has been presented by policy-makers and developers as a simple and cheap technology that enable ageing-in-place with autonomy. The aim of this presentation is to critically discuss what ageing-in-place with autonomy mean for elderly people using telecare. According to some results from ethnography conducted 4 years ago in a catalan telecare service, there are different ways of being autonomous enacted and, given that, also different conceptions of the body and of living at home. By presenting these complexities we want to put forward several ethical questions concerning the current telecare developments. First of all, what new arrangements, practices, collectives and relationships of care arise with the implementation of telecare and smart home systems in care for older people? How do these arrangements shape existing care practices? What definitions of care, and good care, are implied and embodied in the new care arrangements? How do these built-in definitions and normativities differ from and change existing practice? What implications do they have for the meanings of place, distance and home in care? These questions, among other, are being discussed in a FP7 project currently carried out by different research teams in Barcelona, Lancaster, Amsterdam and Oslo and coordinated by Maggie Mort. So in order to conclude, I would like to present these questions and make some remarks based on some insights taken from the current fieldwork and from the former research projects.

Daniel López

Assistant Professor at the Universitat Oberta de Catalunya. Currently working on the implementation of new technologies in care settings like Home Telecare from an STS perspective. The main areas of interest are: a) the emergence of new spatialities and temporalities of care; b) the emergence of new practices of caring and security due to the increasing importance of technologies of accountability; and c) the enactment of hybrid forms of autonomy and independence. Currently involved in an FP7 project called “Ethical Frameworks for Telecare Technologies for older people at home (EFORTT) concerned with the implications of the introduction of remote care technologies worn, installed or embedded in the homes of older citizens/frail older people (see http://www.lancs.ac.uk/efortt/index.html) and also a project funded by the Ministerio called CONDEPCIU concerned with the techno-scientific controversies around the new Spanish care policies addressed to elderly/frail people.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Sue Ziebland’s presentation - Knowledge is Power? The role of health information

Knowledge is often described as ‘power’. Current discourses emphasise the value of health information to the public and patients yet until recently the more complex interactional aspects of acquiring, avoiding and displaying information have received little attention. This study used secondary analysis of qualitative interviews with people in UK who have been treated for a life threatening condition. We consider the symbolic roles that health information has in these accounts.

Wide variation was reported in how health professionals offer (or steer people away from) information.  Decisions cannot be shared without information but the specific information that people want (eg about their own circumstances) is often not available. Patients were advised to quiz consultants about their experience and to ascertain precisely who will be undertaking surgical procedures, but these are challenging issues to raise in consultations. Those who do not seek information sometimes feel that they have relinquished control, or been negligent in their management of their own illness, and thus feel responsible if things go wrong.

Accounts of the manner in which ‘health information’ is handled between the health professional and patient suggests a web of symbolic meanings that  position the patient as more or less expert, responsible or  blameworthy for their health outcomes and the health  professionals as more or less paternalistic, consultative and humane.

Sue Ziebland

Sue Ziebland is a medical sociologist and Reader in Qualitative Health Research at the University of Oxford. Sue has worked as a researcher in the academic, NHS and voluntary sectors and has over 100 publications in social science and health journals and books. Sue is research director of the Health Experiences Research group, University of Oxford. The group of 12 social science researchers conduct qualitative interview studies, throughout the UK, for the multimedia web sites (www.healthtalkonline.org and www.youthhealthtalk.org ).  Sue’s research interests include e-health, self care, information for choice and qualitative methods.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Flis Henwood’s presentation - ‘Health-e discourse? Engaging the community in e-health developments for obesity self-management’

Drawing on an action-oriented research project exploring and intervening in the lived experiences of those seeking to manage their weight, the paper explores how those engaged in weight management position themselves in relation to e-health discourse, exploring their engagements with dominant understandings of obesity, information and technologies (specifically ICTs) in particular. A case is then made for ‘engagement work’ that can explore and exploit the tensions within the discourse to promote a more progressive model for e-health development –one that supports the emergence of an active, critical and engaged citizen-user (the ‘health-e citizen) rather than the less ambitious but much more ubiquitous neo-liberal consumer-user (or ‘informed patient’).

Flis Henwood

Professor of Social Informatics at the University of Brighton in the UK.  In her early career, she published widely on gender and technology issues, co-editing Technology and In/Equality: Questioning the Information Society (2000) and Cyborg Lives? Women’s Technobiographies (2001). More recently, she has published on the social dynamics of e-Health, including an ‘e-Health’ special issue of the journal Information, Communication and Society (2005) and, most recently,  a co-edited volume entitled Gender, Health and Information Technology in Context (Palgrave Macmillan, 2009). Her journal publications have appeared in a range of disciplinary fields including gender studies, sociology of health and medicine, social policy, information systems and media studies.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Mariam Hardey - Private medical care and the Web

The Internet has opened up new opportunities for people to learn about and choose elective medical interventions available across the globe.  I will focus on Web resources that enable people in countries with a National Health Service to choose private health care that is available in countries other than those in which they are citizens.  For example, the nature of the UK NHS means that there is a relatively small market for private medicine and that it is costly compared to that available elsewhere and especially in countries such as Poland and India.

Mariam Hardey

Teaching part-time at the Sociology Department at the University of York. Her research charts the rise of digital social networks and associated media in the lives of young people - commonly known as a Generation-Y.  Mariann’s approach is to draw attention to the increasingly participatory nature of technology, which characterises how the resources have become ubiquitous and take for granted as ‘everyday’ and essential hubs of information.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Laura Machin’s presentation - Cord blood banking: initial observations

In recent years, the collection and storage of biological resources and data has commanded considerable attention in public policy debate and amongst social scientists interested in potentially new forms of regulatory, ethical and political economy. Much of this attention has focused upon public sector initiatives, such as UK Biobank and the UK Stem Cell Bank, but those less well researched are the emerging forms of commercial and private banking. In particular, are cord blood stem cell banks offering parents the possibility of paying to deposit cord blood stem cells taken at birth. Alongside commercial banks is the public sector banking, which emerged after the first cord blood stem cell transplant in 1988. Both instances raise questions around new forms of consumption, parental responsibility and the changing balances between public and commercial bioscience. In this presentation, I will introduce the aims and objectives of this 2-year project, titled ‘the political and moral economy of cord blood banking’, funded by the Economic and Social Research Council. I will also discuss cord blood banking in its current context and present some initial observations from the data collected during the past 10 months.

Laura Machin

Researcher at Science and Technology Studies Unit (SATSU), University of York. Currently working on the umbilical cord blood banking project and the social and ethical context of embryo donation (to other couples for fertility treatment or stem cell research). Generally, I am interested in the social, ethical, historical aspects of assisted conception techniques - specifically, the roles/notions of the patient/consumer/patient groups, the relationships between and within professions (sociology of professions / boundary-work) and the evolving notion of the family (sociology of the family). I am also keen to develop my policy interests in childbirth and maternity services, and infertility counselling.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Michael Morrison’s presentation - ‘Measuring Innovation - a brief introduction to the REMEDiE project’

In this presentation I will introduce my current work on the Regenerative Medicine in Europe (REMEDiE) project. I aim to describe how we have set about trying to measure and assess European commercial activity in regenerative medicine - including stem cells, gene therapy and tissue engineering. I will discuss some of the difficulties we faced in finding ways to appropriately measure this activity in line with the goals of the work package and provide some details of the different approaches we have employed so far. Much of what I discuss is work in progress so I hope to get some useful and stimulating feedback.

Michael Morrison

Currently working on the FP-7 funded REMEDiE project  at the Science and Technology Studies Unit (SATSU) at York, investigating the networks of commercial innovation in regenerative medicine with a specific focus on European biotechnology. Other research interests include the emergence of new (bio)medical technologies and associated issues including, social shaping of technologies, history of medicine and medical technology, and
(sociology of) bioethics, especially with regards to human enhancement and the commercial application(s) of human tissue-derived products.

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Andrew Webster’s presentation - Innovation in health: a social science perspective

This presentation offers a brief account of the ways in which innovation, and more specifically medical innovation, can be understood from within a social science perspective, illustrating the ways in which innovation has to be seen as an articulation of both old and new assemblages, the broad range of socio-technical relations that make it possible and indeed workable. In light of this discussion, the paper goes on to raise a number of issues that need to be addressed in future policy and practice contexts, relating to the take-up, choice, evaluation and globalisation of innovation.

Andrew Webster

Professor Andrew Webster is Director of the Science and Technology Studies Unit (SATSU), and Head of Department of Sociology at the University of York. He was Director of the £5m ESRC/MRC Innovative Health Technologies Programme, is member of various national Boards and Committees (including the UK Stem Cell Bank Steering Committee and UK National Stem Cell Network Steering Committee) and was Specialist Advisor to the House of Commons Health Select Committee. He is national co-ordinator the ESRC’s £3.5m Stem Cells Initiative (2005-9), and was a member of the Royal Society’s Expert Working Group on Health Informatics. He is currently undertaking externally funded research on stem cells as well as the implementation of pharmacogenetics into clinical practice, and is coordinating a new European (EC) grant on Regenerative Medicine (REMEDiE). He is Co-Editor of the Health Technology and Society Series: Palgrave Macmillan (launched at the Royal Society, October 25 2006). His most recent book is Health, Technology and Society: A Sociological Critique (Palgrave Macmillan) 2007. He was elected a Fellow of the Academy of the Social Sciences in 2006.