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)

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)

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.

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.

UPDATE

Following Ismael Peña advises I have drawn new graphics that represents the relationship between people living with chronic disease and the Internet in Catalonia. It looks like the inverse care law could be also applied to these citizens.

I have started to explore and analyse the relationship between people who live with chronic disease and the Internet in Catalonia based on Internet, Health and Society. Analysis of the uses of Internet related to health in Catalonia and all the inputs gathered during my period as a visiting researcher at Science and Technology Studies Unit (SATSU) in the Department of Sociology at University of York.

I would like to share some of the preliminary figures, it is just a working in progress to a multivariate statistical analysis.

Of course any comments or suggestions will be very welcome.

I have read Nijland, N., van Gemert-Pijnen, J. E. W. C., Boer, H., Steehouder, M. F., & Seydel, E. R. (2009). Increasing the use of e-consultation in primary care: Results of an online survey among non-users of e-consultation. International Journal of Medical Informatics, In Press, Corrected Proof.

Abstract

Objective
To identify factors that can enhance the use of e-consultation in primary care. We investigated the barriers, demands and motivations regarding e-consultation among patients with no e-consultation experience (non-users).

Methods
We used an online survey to gather data. Via online banners on 26 different websites of patient organizations we recruited primary care patients with chronic complaints, an important target group for e-consultation. A regression analysis was performed to identify the main drivers for e-consultation use among patients with no e-consultation experience.

Results

In total, 1706 patients started to fill out the survey. Of these patients 90% had no prior e-consultation experience. The most prominent reasons for non-use of e-consultation use were: not being aware of the existence of the service, the preference to see a doctor and e-consultation not being provided by a GP. Patients were motivated to use e-consultation, because e-consultation makes it possible to contact a GP at any time and because it enabled patients to ask additional questions after a visit to the doctor. The use of a Web-based triage application for computer-generated advice was popular among patients desiring to determine the need to see a doctor and for purposes of self-care. The patients’ motivations to use e-consultation strongly depended on demands being satisfied such as getting a quick response. When looking at socio-demographic and health-related characteristics it turned out that certain patient groups – the elderly, the less-educated individuals, the chronic medication users and the frequent GP visitors – were more motivated than other patient groups to use e-consultation services, but were also more demanding. The less-educated patients, for example, more strongly demanded instructions regarding e-consultation use than the highly educated patients.

Conclusion
In order to foster the use of e-consultation in primary care both GPs and non-users must be informed about the possibilities and consequences of e-consultation through tailored education and instruction. We must also take into account patient profiles and their specific demands regarding e-consultation. Special attention should be paid to patients who can benefit the most from e-consultation while also facing the greatest chance of being excluded from the service. As health care continues to evolve towards a more patient-centred approach, we expect that patient expectations and demands will be a major force in driving the adoption of e-consultation.

Summary points

What was already known on the topic?

• The increased public interest in medical information regarding health issues are driving forces for the growth of health services on the Internet. However, the growth of e-consultation in primary care has been minor.
• Access to healthcare and information technology is often most difficult for those populations who need it most. E-consultation can be beneficial for certain patient groups, such as frequent GP visitors and chronic users of medication. Yet, it is unclear whether access to e-consultation is most difficult for these populations.

What did this study add to our knowledge?

• Non-use of e-consultation was primarily due to lack of availability among GPs and to information deficits among patients, such as unawareness of the existence of the service and the possibilities of e-consultation. Proper education and instructions are necessary to increase the use of e-consultation.
• Patient groups who were most motivated to use e-consultation e.g., elderly patients, less-educated patients, chronic medication users and frequent GP-visitors, perceived the greatest barriers towards econsultation.
• Web-based triage systems may be promising, because this study indicates that patients are motivated to use such systems for primary evaluation of medical complaints and for self-care advice.

Again, the results of the empirical research revealed the gap between the potencial of ICTs uses in healthcare and the facts that shape these uses. The inverse care law is still working in the transition of healthcare systems to Network Society.

I’m glad to share my slides presented on World Internet Project 2009 - Macau entitled Health and the Internet: Autonomy of the User. The presentation is based on a paper written by Rita Espanha and myself for the book “World Wide Internet. Changing Societies, Economies and Cultures” edited by Gustavo Cardoso, Angus Cheong and Jeffrey Cole.

I’m delighted with the great atmosphere of the conference due to the different research perspectives that have been presented by researchers around the world. Twitter #wip200. Finally, thanks Rita for the opportunity to work together. This presentation and the book chapter are just the begining.