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)

Francisco Lupiáñez-Villanueva and Michael Hardey - Health professionals, the Internet and Internet informed patients

The practice of medicine and health care has been increasingly influence by and made use of the Internet as a source of information, communication and social interaction. This paper examines how doctors, nurses and community pharmacists use the Internet and how this shapes their interaction with patients. It is based on data from surveys of doctors, nurses and pharmacists working within the Catalan National Health Care System (CNHS) that were carried out during 2006. The consequent data provides an extensive and detailed quantitative database that is amenable to multivariate statistical analysis. This analysis is described and from it the manner in which the different health professions engage with Information and Communication Technologies (ICTs) and the Internet is identified.  It is suggested that the Internet should now be understood as part of mundane work and that professionals have recognised that it can be an important source of information and support for patients. There appears to be a cumulative effect whereby the more engaged with ICTs practitioners become the more likely they recognise and respond to patients who want to discuss and use resources and information from the Internet.

“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)

Michael Hardey - Consuming professions: user-review websites and health services

The relationship between doctor and patient was variously regarded as ‘special’, ‘outside’ or otherwise at a distance from other consumer experiences. Since then, the status of doctors has changed and information about health and illness has moved from the confines of the consulting room to the World Wide Web. This presentation considers the recent development of Web 2.0 resources that are constructed around user-generated content about identified health practitioners and services. Web sites where users can both read and write comments about health practitioners and services reflect the broader consumer content industry commonly associated with sites like Amazon and TripAdvisor.

Michael Hardey

Reader in Sociology at the Hull/York Medical School and the Department of Social Sciences, University of Hull. He is also an Associate Director Researcher of the Science and Technology Studies Unit, University of York . His main research interests are in mediated information and relationships. This falls into three broad areas: e-health and in particular the role of the Internet in shaping health beliefs and behaviours; e-body and identity (particularly the representation of the self through new media); and the generation and mediation of information through Web 2.0 resources.

“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)

Imma Grau - Studying Virtual Communities for patients with chronic illnesses, in Forumclinic

Conventional clinical care can be complemented by digital information and communication technologies, while offering an opportunity to enhance patient autonomy. It has been suggested that people with a high level of autonomy make a more intensive use of Internet and that this use, in turn increases the level of autonomy. Internet would appear to be a powerful tool for complementing the health care of chronic patients.

The Web 2.0 virtual environments promote collaboration and quick exchange of information among users. Some of such groups of Internet users have become working virtual communities, as defined by Barry Welman: networks of interpersonal links that provide sociability, support, information, a sense of belonging, and social identity. The same need applies to many health information seekers.

Forumclinic is a DVD and web-based interactive programme for patients, aimed to improve patient autonomy regarding personal health matters. Authors are professionals from Hospital Clinic, a university hospital and leading research institution, and from associated health centres. The “Fundación BBVA”, a non-profit organization of a bank, finances the project.

On the web, information for each illness section is classified into four categories: 1) Text that summarises basic data on each disease; 2) News, updated weekly from recent research, related to every illness that is of potential interest to the chronic patient, produced by health professionals with a journalistic approach; 3) Videos and 3D animations that explain biological mechanisms or techniques for treatment or rehabilitation in order to facilitate the understanding of the text; and 4) the professionally-moderated discussion forums.

Forums facilitate dynamic group interaction between professionals and patients through direct communication, introduction of topics raised by the patients, or through the ‘suggest a topic’ box.

In this presentation I’ll explain how we did the analysis on the generated Virtual Communities using three tools:

The first is based on the results provided by Google Analytics, after separation of data by disease. For the second, we ask users to register, include their socio demographic data. This has allowed us, through analysis of server logs to obtain general behaviour patterns. Finally, the third method is a qualitative method: participant observation. The information of the present analysis corresponds to the year 2008.

Imma Grau

Degree in Telecommunications Engineering, post graduate in Technology and Organization Management and Innovation followed by a Media and Communication Studies Degree, all at Ramon Llull University. Advanced Studies Diploma from “ Information and Knowledge Society” in the IN3 PhD programme (UOC).
Currently working as Audiovisual Area manager of the Clinic Hospital, Barcelona, and Director of forumclinic Interactive Programme providing therapeutic education to people with long-term illnesses, developed using information and communication technologies, with the financial support of Foundation BBVA, the Science and Education Department, the Autonomous Government of Catalonia, and some patient associations collaboration. 

Her research is focussed on studying the diffusion and uses of information and communication technology health services, and Internet as a medium for spreading scientific knowledge. She was involved in the Technological Modernisation, Organisational Change and Service Delivery in the Catalan Public Health System group, directed by Manuel Castells within the framework of the Internet Intedisciplinary Institute (IN3-UOC).

“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: 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.

I’m deligthed to announce the “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)

Description

Digital technologies and the Internet are increasingly changing how people understand their health, how health care is organised and delivered to patients and opening up new scientific approaches and innovations. For example, health care records are being digitised and made available though various devices to users in most nations with a centralised health care system. Developments in genetics, imaging technologies, cloning and stem cell research are changing how health is understood and the treatments available to individuals. Such changes in the organisation of health and medical knowledge are increasingly engaging with the public through information that is made available on the Internet.

The Internet is now a vast repository of information about health and well-being.  Supported by Web 2.0 resources, the Internet has increasingly included information about health, illness and lifestyles provided by individuals.  As more of the public become connected through computers and mobile devices new opportunities are created for the publication of health information and advice.  However, the diversity of health information raises questions about quality and the impact incorrect or poor information may have on individuals.  There is already evidence that the doctor-patient relationship is changing in the face of developments in Information and Communications Technologies.  In addition, while people are the advice people may choose to follow may not necessarily result in health behaviours.  For example, men defined as obese may share information available on the Internet to remain ‘big and fat’ despite medical advice to the contrary.

The desire to provide a seamless inter-agency service built around the needs of individual people (and more broadly clients and patients of national health and welfare services) is a common aspiration in most countries with a centralised welfare system.  Developments in Telecare have seen the growth of ‘smart homes’ that enable people to live safely at home through various monitoring and intervention systems.  Such monitoring devices are also being used by people in pursuit of healthy bodies through exercise.  The iPod or iPhone can, for example, be used to monitor running and other physical activity. These technologies raise questions to do with the privacy and ownership of information.  In other words information technology has become both directly and indirectly part of everyday life for many people and those who play a part in their lives.

In this broad context, the aim of this workshop is seeking to understand how, for whom and to what extend changes in the material conditions of health information and communication is transforming the generation of medical knowledge, the conception of health and the demand and provision of healthcare delivery.

To reach this aim, the workshop is organized in discussion sessions where social researchers will present their recent research results, methodologies and experiences with enough time for rich interaction among the participants.

Program

26th Thursday

10:00 – 10:15 Opening session
10:15 – 12:00 Presentations

• 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

12:00 – 12:15 Coffer-break
12:15 – 13:45 Presentations

• Mariann Hardey - Private medical care and the Web
• Eulàlia Hernádez - Providing resources for caregivers trough the Internet.

13:45 – 15:00 Lunch
15:00 – 16:45 Presentation

• Flis Henwood - ‘Health-e discourse? Engaging the community in e-health developments for obesity self-management’
• Sue Ziebland - Knowledge is Power? The role of health information

16:45 – 17:00 Coffer-break
17:00 – 17:30 Conclusions of the day

27th Friday

10:00 – 10:15 Opening session
10:15 – 12:00 Presentations

• 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

12:00 – 12:15 Coffer-break
12:15 – 13:45 Presentation

• Michael Hardey - Consuming professions: user-review websites and health services
• Francisco Lupiáñez-Villanueva and Michael Hardey - Health professionals, the Internet and Internet informed patients

13:30 – 15:00 Lunch
15:00 – 16:00 Conclusions of the workshop

Thanks indeed to the participants, to IN3 for the support and to Laura Vidal for her wonderful organization work. See also information available at IN3.

On 26th October I have the opportunity to act as a moderator in a symposium called Communication in health 2.0, organized by the Institute for Continuing Education (IDEC) and the University of Pompeu Fabra’s Science Communication Observatory (OCC). First of all, I would like to thank Vladimir de Semir, Gemma Revuelta and Clara Armengou for their invitation and their organization of the symposuum. I really think that University has a role as a hub to disseminate and research about this topic in collaboration with the rest of the actors (industry, healthcare providers, professionals, Government,…).

Act as a moderator gave me the opportunity to work on the Health Communication field as a framework of part of the research I have been doing and develop the first step towards the conceptualization of Health Mass-Self Communication.