On August 30, 2010, Susannah Fox posted E-patients, Cyberchondriacs, and Why We Should Stop Calling Names starting a discussion about names. I think the discussion could be summarised in two main trends.

On the one hand, e-patients name is still useful as a brand to spread the message of individuals utilising the Internet for health purposes. Therefore, using the Internet for seeking health information on injury, disease, nutrition, improving health, etc could be consider as a “proxy” to understand the diffusion of e-patients phenomenon or normalization and routinization of technological resourcefulness, mentioned by Carl May. Susannah Fox has been analysing data from USA since 2000. It looks like that the use of the Internet for health in this country has reached a “saturation” point among Internet users, however non-Internet users and minorities, mentioned by Gilles Frydman, are still far away from this saturation point. As a part of this digital divide in Health, it is different to engage young or elderly populations. For the first group, talk about e-patient does not make any sense because, in plain English, they are digital natives while for elderly population is totally different. However, digital natives will be the patients of the near future.

To tackle the situation in Europe I have collected some data from Eurostat checking Information society statistics based on the surveys on ICT usage in enterprises and households. They have gathered the following question “I have used Internet, in the last 3 months, for seeking health information on injury, disease, nutrition, improving health, etc.)”. I have developed charts of European countries and of EU 15, EU 25 and EU 27 for ‘% of individuals’ and ‘% of individuals who used Internet in the last 3 months’. All charts revealed a positive trend but Europe is still behind USA, even the penetration of broadband in Europe is bigger than in USA.

Click on the image below to enlarge the chart to full viewing size

On the other hand, we have to realise that this proxy does not tackle the complexity of this phenomenon and its relationships with other variables, including digital and non-digital aspects of individuals daily live. Therefore, e-patient name could be considered as an inhibitor of this complexity and it does not help us to go deeper in our analysis.  I guess we may have to find a balance between get bored spreading the message and get excited about deeper analysis.

Lately, I have been checking systematic literature reviews about Chronic Disease Management, Remote Monitoring and Treatment and Information and Communication Technologies:

• Whitten, P. S., Mair, F. S., Haycox, A., May, C. R., Williams, T. L., & Hellmich, S. (2002). Systematic review of cost effectiveness studies of telemedicine interventions. Bmj, 324(7351), 1434–1437.
• Louis, A. A., Turner, T., Gretton, M., Baksh, A., & Cleland, J. G. F. (2003). A systematic review of telemonitoring for the management of heart failure. Eur J Heart Fail, 5(5), 583–590.
• Jaana, M., & Pare, G. (2007). Home telemonitoring of patients with diabetes: a systematic assessment of observed effects. J Eval Clin Pract, 13(2), 242–253.
• Pare, G., Jaana, M., & Sicotte, C. (2007). Systematic review of home telemonitoring for chronic diseases: the evidence base. J Am Med Inform Assoc, 14(3), 269–277.
• Jaana, M., Pare, G., & Sicotte, C. (2009). Home telemonitoring for respiratory conditions: a systematic review. Am J Manag Care, 15(5), 313–320.

I do not want to reproduce all the abstract here,  but some common trends could be identified:

• Lack of cost-effectiveness analysis;
• Lack of Randomized Controlled Trials;
• Difficulties in extrapolating or comparing the results;
• Patients satisfaction and acceptance of the technology.

To sum up, following Pare et al. (2007) “Home telemonitoring of chronic diseases seems to be a promising patient management approach that produces accurate and reliable data, empowers patients, influences their attitudes and behaviors, and potentially improves their medical conditions. Future studies need to build evidence related to its clinical effects, cost effectiveness, impacts on services utilization, and acceptance by health care providers”.

Is not about TECHNOLOGY, is it?

On March 15th to 18th the Ministerial High Level Conference on eHealth and the World Health IT Conference and Exhibition were being held in the same week in a joint initiative called “e-Health Week 2010”. First of all, I would like to congratulate the organizers, specially TICSALUT Foundation and ehealthweek2010, for the very well organized conference and their social media coverage.

The conference was divided into five themes:

• eHealth for Sustainable Healthcare Delivery
• eHealth Addressing Global Challenges through Local Actions
• eHealth works: Here is the Evidence
• eHealth Market: Past and Prospects
• eHealth User Platform

Furthermore,  Paralel sessions and Plenary Sessions were coveraged by @ehealthweek2010 using Twitter #hastag as follow:

Paralel Sessions

• eHealth Governance
• How can IT Help Fight Pandemics
• Is Sustainability of Healthcare Possible without eHealth?
• When Telemedicine does Deliver!
• Embedding eHealth into New Professional Curricula
• Ageing - A Global Challenge
• Empowering the Patient through Information Delivery
• Beyond Technical Interoperability
• eHealth for the Economy
• ICT for a Global Infraestructure for Health Research
• eHealth and Healthcare Org The Chiken and the Egg
• Standards for a Global Scene
• eHealth Procurement
• eHealth for Mental Health

Plenary Sessions

• The ehealth Agenda in the UE
• The right information, at correct place and at the right time
• 2.0 Health care in practice
• EU-US cooperation in eHealth: facing common challenges
• EHealth for urgent public health challenges
• How contributes eHealth in health and well being
• The impact of eHealth in organizations and health personnel
• The dangerous decade. Challenges for system builders national health information
• European market of e-health: dream or reality?

I also had the opportunity to tweet some of the sessions. On one hand, it was a wonderful opportunity for networking and for watching in action how policy-makers, practicioners (specially Hospital managers and IT managers) and the ICT Health industry work together. On the other hand, there was a lack of analytical/empirical presentations so it was remarked by most of the participants that more research is needed. Furthermore, there are many eHealth, mHealth, Health 2.0,…. Health has been always related to technology so probably it is time to delete all the letters and just talk about HEALTH. Nowadays, HEALTH could not be understood without Information and Communication Technologies and these technologies could not be understood without economic, organization, social and cultural changes.

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)

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.

“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.