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Innovative health technologies: health systems in transition Synthesis

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

27th November

Cord blood banking: initial observations - Laura Machin

“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.

Innovation in health: a social science perspective - Andrew Webster

“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.

Workshop: Innovative health technologies: health systems in transition

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.

Notes from “The Hacker Ethic: The New Culture after the Current Global Economic Crisis”

Today I have the great opportunity to attend at a research seminar entitled “The Hacker Ethic: The New Culture after the Current Global Economic Crisis” led by Prof. Pekka Himanen, who is currently a Visiting Professor at Internet Interdisciplinary Institute.

After a very inspiring presentation, Prof. Himanen has encouraged us to keep the discussion online following an open hacker ethic. So here goes my thoughts about his presentation and his challenges:

  1. I wonder how and to what extend the results of the analysis carried out in collaboration Rita Espanha and Gustavo Cardoso about the Internet users within the World Internet Project could help to identify those users who can easily face the three challenges mentioned by Prof. Himanen, another 3C formula: (Clean = enviromental crisis) + (Care = welfare state 2.0) + (Culture = multicultural life) and also could clearly identify those who will be excluded or disconected.
  2. I wonder how and to what extend the Catalan BioRegion could be considered as part of what Prof. Himanen has called “Innovation center dynamics” due to Prof. Himanen 3C formula:  “culture of creativity” + “community of enrichment” + “creative people”.

I’m excited about the online discussion and Friday meeting.

Health and the World Wide Internet

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.

World Internet Project and Health

I’m so excited about World Internet Project 2009 Macao (July 8 - 10) where I’m presenting a paper done with Dra. Rita Espanha entitled Health and the Internet: Autonomy of the User.

Abstract:

Information access and distribution are growing and the ways in which this information and knowledge democratisation occurs are many, scattered and diverse. Individual health, and its daily management, never involved as much information as nowadays.

The aims of this paper are: to identify and characterise the role of daily information and communication practices for health individual management in Portugal and to identify and characterise some trends on a global scale of the Internet use for health purpose.

Considering all Internet activities within WIP database 2007, cluster analysis was carried out to define an e-readiness index to the Network Society. Citizens who have more probability to be in worse health status due to their age are those who have also more probability to be less e-readiness or even dropped out of the Internet.

Parallel to the “informed patient” concept, we must consider also in our approaches the “generation divide” and the “e-readiness divide” concepts associated with health.

The World Internet Project (WIP) is a major, international, collaborative project looking at the social, political and economic impact of the Internet and other new technologies. Conceived as the study of the Internet that should have been conducted of television in its early days, the WIP believes that the Internet’s influence will ultimately be far greater than television. Whereas television has mostly been about entertainment, the Internet has the potential to transform how the world plays, works and learns… +info

I’m working on the presentation but after the meeting it will be uploaded. Finally I would like to thank Imma Tubella, Carlos Tabernero and specially Joan Torrent, colleagues from Internet Interdisciplinary Institute (IN3) at Open University of Catalonia, for their support to travel to Macao.

Internet, Sex and “Men who have sex with men” Workshop

Today, I have been invited by StopSida to participate in a workshop about “Internet, Sex and Men who have sex with men“. Here goes my presentation (in Spanish) which tries to show an overview about the Internet, Citizens and Health: challenges and opportunities.

Finally, I would like to share my presentation and also to thank Katy and Percy for the wonderful organization of the event that allows us to think and learn about prevention and public health and the roles of NGO, Government and Private sector (as Bakala.org) on these issues. Due to the dynamic of the workshop the debate was very interestig, I wil try to translate to English some of my notes and also some of the participants’ interventions.

Online Social Networks Roundtable with Howard Rheingold

First of all, I would like to thank Max Senges and Josep M. Duart as organizators of the roundtable with Howard Rheingold at Open University of Catalonia. Ismael Peña has alredy posted about Rheingold wonderfull talk, but here comes my notes and my reflection.

Roundtable UOC unesco chair on TwitPic

Online Social Networks

  • enable people to co-operate;
  • have always existed, but ICT empower and transform them;
  • are places where communities can growth.

Cultivating Online Communities

  • promote social capital;
  • support Life Long Learning and teaching
  • connect people and build relationship
  • develop a community memory and knowledge sharing

Participatory Media

  • From text based only community to participatory media;
  • Transforms social structures, culture, community, power, wealth ans is characterized by: many to many, consumers/producers, active participation and amplification of network capabilities;
  • Changes literacy.

Online Social Community requires

  • Marketing is the foundation of online community planning.
  • Design Social Architecture.
  • Technological planning.

Watch an eight minute intro screencast of the SMC, created by Howard Rheingold

Howard Rheingold talk was wonderful, his discourse could be applied to any virtual community. But, in this case, the debate was focused on education and how can we develop online social networks in this field at Open University of Catalonia (UOC), a virtual university with 40,000 students.

On one hand, I think online social networks as a “formal” learning/teaching environment challenge educational, organizational and technological model of my university because it causes a tremendous tension between the need of flexibility   to develop those kind of initiatives and the need of bureaucracy to maintain 40,000 online students within the virtual campus. It just strains all the actors who are involved in the teaching and learning process: teachers, students, managers…

On the other hand, a digital identity is needed to generate online social networks, but how many students or faculty members have develop this digital identity? how many students or faculty members have participatory media literacy?.

Finally, the interaction between this new media landscape based on ICT and the social structure could generate smart mobs, are we ready to take this kind of risk?. I’m ready as well as my institution -I guess- and I’m trying to open the virtual classroom to this new media landscape, it’s fun and most of my students enjoy it too. But as an experiment it has to be evaluated and assessed so… further research is needed each semester. I will present the results here to discuss.

Internet Research 9.0: Rethinking Community, Rethinking Space. Key speaker: Mimi Ito

Notes from the conference: Internet Research 9.0: Rethinking Community, Rethinking Space. Copenhagen October 15 – 18, 2008. Mimi Ito: Hanging Out, Messing Around and Geeking Out: Youth Participation in Networked Publics.

Mimi Ito is a cultural anthropologist studying new media use, particularly among young people in Japan and the US. Her research right now focuses on digital media use in the US and portable technologies in Japan. Her last works published are: Networked Publics and Beyond Barbie® and Mortal Kombat: New Perspectives on Gender and Gaming. I strongly recommend the reading of her blog.

Her presentation was based on Digital Youth Research project:

Since the early 1980s, digital media have held out the promise of more engaged, child-centered learning opportunities. The advent of Internet-enabled personal computers and mobile devices has added a new layer of communication and social networking to the interactive digital mix. While this evolving palette of technologies has demonstrated the ability to capture the attention of young people, the innovative learning outcomes that educators had hoped for are more elusive. Although computers are now fixtures in most schools and many homes, there is a growing recognition that kids’ passion for digital media has been ignited more by peer group sociability and play than academic learning. This gap between in-school and out-of-school experience represents a gap in children’s engagement in learning, a gap in our research and understandings, and a missed opportunity to reenergize public education. This project works to address this gap with a targeted set of ethnographic investigations into three emergent modes of informal learning that young people are practicing using new media technologies: communication, learning, and play +info.

Mimi Ito stars with the team members of the project and with the objectives:

The first objective is to describe kids as active innovators using digital media rather than as passive consumers of popular culture or academic knowledge.

The second objective is to think about the implications of kids’ innovative cultures for schools and higher education and to engage in a dialogue with educational planners.

The third objective is to advise software designers about how to use kids’ innovative approaches to knowledge and learning in building better software.

Then she explains the methodology based on ethnographic research in both local neighborhoods in Northern and Southern California, and in virtual places and networks such as online games, blogs, messaging, and online interest groups. Mimi Ito also remarks the amount of data collected: 594 semi structure interviews; 79 informal interviews; 67 groups; 28 diary studies; 4146 questionnaires and also more than 5000 hours of observation of 10468 profiles; 15 on-line forums; 389 videos; 50 events and classroom observation.

After that she introduces to the audience the term networked publics as “an alternative to terms such as audience or consumer. Rather than assume that everyday media engagement is passive or consumptive, the term publics foregrounds a more engaged stance. Networked publics takes this further; now publics are communicating more and more through complex networks that are bottom-up, top-down, as well as side-to-side. Publics can be reactors, (re)makers and (re)distributors, engaging in shared culture and knowledge through discourse and social exchange as well as through acts of media reception”.

Mimi Ito remarks that Youth Networked Publics like traditional youth publics are based on: local scale of interaction, many to many and peer to peer forms of participating, sharing and learning. But unlike traditional youth publics are also based on: accesibility 24/7, persistence, networked peer space, access to more specialized and niche publics, broader contexts for publication and privacy.

Networked publics are sources of diversity about identity, culture and practice. Further beyond  access issues, Mimi Ito identifies two main drivers:

1. Friendship-driven learning and participation: peer to peer sharing and reputation.

Kids prefer to hang out, participate, socialize off-line but time, space and structural restrictions encourage them to go on-line. Research results reveals that most of the kids prefer to meet people first off-line and after that face to face meeting go on-line. Otherwise, you can be consider as a freak or a geek by your own friends “Meeting people first on-line is not cool”.

Mimi Ito uses the term peer pressure to identify some practice among kids “If I put someone in my top ten friend on Facebook or MySpace, that someone is supposed to do the same with me”. On-line reputation has consequences on off-line reputation. Another way of peer pressure was the consequences of private data available on SNS as amplifiers of “drama” thinking about the changes on engaged or falling in love in the personal profile.

Finally, Mimi Ito states that kids share social practice… they help each other to create, produce and distribute content through social technology.

2. Interest-driven learning and participation. Still a minority of youth is driven by interest. Two case studies based on FANSUBBING and ANIME MUSIC VIDEOS.

After the explanation of these two case studies Mimi Ito finishes her talk with some considerations about the diversity in genres of youth participation on-line;  peer based learning, participation and reputation; the scale of networked communities and the youth access to broader audiences; new forms of litarecy and media social practice used by youth to produce knowledge without the constrictions of the adul world.

I really enjoy Mimi Ito speech and her work but I wonder why her research project does not take into account the traditional categories like education level, parents’ wages, family structure,… Do they matter? Am I old fashion?

Update - Video Mimi Ito Keynote @ IR9.0