As a result of Health and Web 2.0 in the Information Age Conference: from empirical data to Web 2.0 trends,  three videos and two power point presentations are available. Furthermore, the conference’s speaker and I had a interesting conversation with  Salvador Tordera, a journalist from Open University of Catalonia. A few days ago, Salvador has written a report titled Medical consultation 2.0:

Chatting about sexuality in Second Life, receiving a text message from your doctor to remind you to take your medication, checking on your position in a hospital waiting list online… All of these actions are already possible thanks to the application of information and communication technologies (ICTs) in the health sector. The internet is a very powerful tool that gives users greater autonomy and control over their health –which surveys around the world have shown to be the greatest concern in people’s lives. As with all processes involved in the rapid changes in the information age, ICTs open up very interesting possibilities –but not without certain risks.

Using the internet for medical questions has increased both among service users and professionals in the sector. In Catalonia, 40% of internet users carry out searches or procedures relating to health. Despite the increase in the amount of information available, it has not led to greater interaction between those involved in the system, increased flexibility or decentralisation. The vast majority of the content related to health on the internet is limited to informative sites giving advice or guidance from institutions and professionals, or user associations and individuals.

According to experts in the field, the internet is used just like any other media with the added problem that its channels have not yet completely developed; in other words, they do not make full use of the unique nature and benefits of the net. These are some of the conclusions outlined in the UOC’s Project Internet Catalonia (PIC) study coordinated by professor Manuel Castells, which dedicated one of its lines of investigation to the use of ICTs in the health sector.

With the arrival of web 2.0, the user has ceased to be just another consumer and has become a producer of content. With this new development now a reality, Professors Rita Espanha, from Portugal’s Sociological Research Centre - Communication Observatory, and Michael Hardey, from the Hull York Medical School, UK, were invited to a seminar by the TicSalut Foundation and the UOC to talk about the results of their latest research.

Information control

Studies show that 25 percent of the information relating to health on the internet is incorrect. Faced with this fact, an inevitable question emerges: what can be done to control the information on a subject that is so crucial to people’s lives? “Virtually nothing. As with the rest of the information on the internet, certification is an initiative devised by providers, but users are free to choose which source they use and decide whether to believe it or not; it is up to them,” argues Professor Espanha.

According to this sociologist’s research in Portugal, “users always trust information more when it is published by public institutions and when it has close cultural links to them”. However, she also considers that we need to bear in mind that the internet is global: “if someone with gastroenteritis in Brazil (where the illness can be fatal) consults a website in Portugal (where the illness is less serious due to the existence of an established health infrastructure), incorrect advice can be extremely dangerous for the patient”. Although it can be difficult at times, due to the vastness of the internet, users need to take an active and responsible role and adapt the information to their own situation.

The expansion of web 2.0

In the majority of countries, such as Portugal or Catalonia, health technology is still using the first version of the internet, although the new participative web tools (wikis, blogs, social networks, etc.) are opening up the way and bringing with them new benefits. Professor Michael Hardey has been studying the evolution of the internet in relation to health in the English-speaking world for some years. Hardey assures us that “web 2.0 has become an inseparable part of people’s daily activities. This is particularly apparent with the under-30s and nowadays the health sector, as well as other professional sectors, cannot ignore it.” Social networks are being established as a platform for measuring the quality of the services and, in particular, for sharing experiences and concerns relating to illnesses (www.patientslikeme.com). These tools were discovered and pioneered by HIV sufferer associations, who were the first to organise themselves over the internet.

In California, USA, which has a market led healthcare system, there are some initiatives where patients rate hospitals and doctors online (www.rateMd.com). Likewise, mash-up websites have also been developed that allow patients to anonymously enter details relating to their illness and then monitor it on a map and locate patients with similar symptoms (www.whoissick.org). According to Hardey, mash-up applications allow very useful variables to be combined from a health point of view; for example, a user who has asthma could be warned by mobile phone that they are about to enter a street with a high level of pollution.

Moreover, in the USA, Google Health has been created by the computer giant to create medical profiles that can be consulted online, with the details that users themselves have entered protected by a password. At the moment, it is only available to those in the US, although its coverage will be worldwide in the future. However, as Professor Espanha states, “the main problem with this application is that the patient can decide to hide important information from their medical records”, and this means that we cannot be sure that we are looking at a genuine, professional medical history online. Google’s great competitor, the multinational Microsoft, has a similar application called HealthVault.

John Hopkins Hospital in Maryland, USA, has also developed web 2.0 tools for health that allow its patients with reading difficulties to download news, reminders and advice in podcast format. Institutions in a number of countries have also created virtual worlds, such as Second Life, to make health issues more accessible to the young (in Spain, the Spanish Society of Family Medicine has an initiative in this area).

Health 2.0 in Catalonia

The Catalan government has various initiatives relating to health and web 2.0 applications. Examples include the creation of an online and personalised communication channel from the Health Department and a single clinical history that is accessible and editable from any point on the territorial network.

Changes in the patient-doctor relationship

According to Hardey, one of the sensitive points of this new paradigm (e-health) is the erosion of the, traditionally paternalist (“doctor knows best”), relationship between patient and doctor. This restructuring towards an online model can reduce the support for the traditional channels (face-to-face/paper) and experts warn of the risk of reinforcing pre-established patterns which impede access to health services for certain groups.

The so-called digital divide is also present, as not all users have access to the internet and cannot benefit from these advances, either because of socio-economic factors or a fear of the new technologies. On the other hand, some evidence shows that medical consultations made over the internet help to bring older people closer to the new technology and as a consequence improve their ability to keep up-to-date and reduce their feeling of isolation. In short, e-health encourages users to take a more active, autonomous and efficient role in the management of their own health and, in turn, offers health service providers a better, faster and more personalised way of communicating with their users.

I would like to thank Salvador for his report that summarize our talk.

Little by little Web 2.0 movement is being approached by theory and empirical data. As an example of empirical data approachs, OECD has launched Participative Web and User-Created Content. Web 2.0, wikis and social networking

The concept of the “participative web” is based on an Internet increasingly influenced by intelligent web services that empower users to contribute to developing, rating, collaborating and distributing Internet content and customising Internet applications. As the Internet is more embedded in people’s lives users draw on new Internet applications to express themselves through “user-created content” (UCC).

This study describes the rapid growth of UCC, its increasing role in worldwide communication and draws out implications for policy. Questions addressed include: What is user-created content? What are its key drivers, its scope and different forms? What are new value chains and business models? What are the extent and form of social, cultural and economic opportunities and impacts? What are associated challenges? Is there a government role and what form could it take?

These kind of initiatives help us to a better understanding of Web 2.0 phenomenon and to analyse in what way and in what measure the ICT’s, especially the Internet, are appropriated by the current social structure, the Network Society.

I’m glad to announce that Health and Web 2.0 in the Information Age videos are available at YouTube.

Health in the Information Age by Rita Espanha

Health and Web 2.0 by Michael Hardey

Health and Web 2.0: initiatives from Catalonia Government by Joan Guanyabens

Enjoy them! Thanks again to those who made this conference possible. Of course, Feedbacks are welcome!

First of all I would like to thank Gustavo Cardoso, Miquel Angel Mayer and indeed Rita Espanha and Michael Hardey for the marvellous working days we had in Barcelona. It was a honour to have the opportunity to share during three days thoughts, reflections, past researches and ideas about health and the Internet. I’m sure those are just the beginning of future collaborations. Thank you very much for such a wonderful days.

The conferences matched the audience’s expectations. Michael and Rita have allowed me to upload their presentations to the Internet as long as many people have showed their interest in the conference but they were not able to attend to Barcelona. I ‘m pleasure to announce that both conferences were video recorded and will be available in two week at UOC YouTube Channel.

Rita Espanha and Gustavo Cardoso have been reserching the transition to Network Society in Portugal. Most of the researches are available at OberCom. OberCom (Observatory for the Media) is directed by Gustavo Cardoso. He and Rita Espanha supervise the centre’s scientific research development; manage the centre research networking and institutional relations. OberCom is a non-profit research centre whose main goal is the production of data and diffusion of information about the Media, thus contributing to better knowledge of the field of communications in Portugal.

As I posted before, they have developed a research project titled Health in the Information Age. Their main conclusions were showed in Rita’s presentation

In 1999 Michael Hardey wrote Doctor in the house: the Internet as a source of lay health knowledge and the challenge to expertise. He was one of the first researchers who started to analyse Health and the Internet and the transformation of the relation between health professions and their clients/users/patients. In 2001, “E-Health”: the Internet and the transformation of patients into consumers and producers of health knowledge was published. Is it sound like Web 2.0?. His forthcoming paper will be Hardey, M. (2008) Public health and Web 2.0, Journal of the Royal Institute of Health Promotion 128(4):171-179

Finally, I would like to thank International Graduate Institute (Open University of Catalonia) and TicSalut Foundation for sponsoring the conference.

I’m pleasure to announce “Health and Web 2.0 in the Information Age Conference” on 15th May at Barcelona Biomedical Research Park. The speakers are:

• Prof. Rita Esphana (CIES-ISCTE - OberCom, Portugal) - “Health in the Information Age”
• Prof. Michael Hardey (Hull/York Medical School - SIRU, UK) - “Health and Web 2.0″

The conference is sponsored by International Graduate Institute (Open University of Catalonia) and TicSalut Foundation and is open to the public (the lectures will be in English. A simultaneous interpretation service will be available) :

• Programme
• Free registration

I’m excited with Michael and Rita conferences and even more excited with the two days before the conference. After many emails and a visit to Lisbon we are going to meet face to face to all together to strengthen future collaborations. Network is great!

Following David Rothman’s initiative I started to collect wikis focus on health. I have added to the list Wikiecho launched by Dr. S. Sulfi

Wikiecho is a project to create a free, up-to-date and reliable online resource covering the rapidly advancing field of echocardiography . Check out the Help page to see how you can edit any page , or the Project page for more information about Wikiecho and getting involved.

This new initiative makes me think about E-Health and Society: An Empirical Study of Catalonia. One of the findings of this research project points out that the Internet is conceived by healthcare professionals as a space of information, not of communication. Moreover, the large majority of physicians does not use the Internet to spread their work. Only 19% have a personal web site and only 5% a blog. Furthermore, of those who have a web site, only 5% say that they established the site to communicate with their patients.

The research project also shows that most medical doctors consider the web as a provider of contents. 65% consider that the information posted is relevant. The majority considers that looking for information in the Internet would be positive for their patients and for the relationship between doctors and patients. However, 49% of doctors never recommend patients to check their medical condition on the Internet, and another 38% only do it rarely.

So, the principle of consulting the Internet is well considered by doctors, but they rarely put it into practice with their own patients. Research report results reveal that the lack of time during face to face consultation and the lack of training as the main reasons of this behaviour. Furthermore, physicians who have developed their own website talk about the Internet health information with their patients more than those who haven’t developed their own website.

Checking my RSS I have found a interesting post titled Health Care’s Broke: Physician Rating and Quality Indicators where the author mentions some physicians’ and hospitals’ opinions about Web 2.0 rating tools:

You’re only going to get the extreme patients to evaluate you (and often the unhappy ones)

The unhappy patients will have the opportunity to publicly say how terrible the doctor is, but because of privacy rules, the doctor or hospital cannot comment or defend him or herself

There is too much emphasis on bedside manner and convenience, and not enough information on outcomes — “How Good A Doctor Am I?”

Even if there is information on outcomes (like in the hospitals’ cases) if this determines payment or discourages future patients because of a bad rating of outcomes, the physician will be much less likely to risk treating a very sick patient, who will likely have a bad outcome no matter what

These systems also ignore where a hospital operates or where a doctor works — hospitals with large populations of poor patients are likely to be sicker than hospitals in affluent areas. Academic hospitals which often care for many incredibly complex, sick patients might be compared to relatively straightforward, simple patients at another hospital down the street.

After this, the author suggests some relationship between “Pay for Performance” and Web 2.0 rating tools and he gives some advices for hospitals and physicians.

A few moths ago I posted about Web 2.0 challenges the tools for rating quality of health information on the Internet and I wondered if Web 2.0 could really change the production and consumption of health information and the consequences of this virtual shift on quality and on expert and lay knowledge.

Right now, I also have to wonder about the consequences of Web 2.0 on patients’ preferences when they are looking for a hospital. Could this kind of application really move the demand side of healthcare market? What is the social scalability of Web 2.0 initiatives to be worth?

Do you remember the Time Person of the year 2006? We are almost ready for 2008 and little by little we know something more about IT:

• about this catch-all buzzword -Web 2.0- that people use to describe a wide range of online activities and applications;
• about how many people are avid participants in all that digital life has to offer;
• about what does this phenomenon mean from a theoretical point of view
• about the relationship between this phenomenon and the social structure of our time, the Network Society
• and, lately, about who’s really participating in Web 2.0. 

The knowledge about the TIME person of the year 2006 doesn’t question the potential of that “young person”, it just helps us to a better understand of the phenomenon, to distinguish between facts and promises and to analyze the social consequences on a broad view.

Just two trends done by Blogpulse. Does they mean Digital Natives are interested in International Student Assessment?

I wonder how many social researchers are thinking about The OECD Programme for International Student Assessment (PISA) and Digital Natives - Blog?

About The OECD Programme for International Student Assessment (PISA):

Are students well prepared for future challenges? Can they analyse, reason and communicate effectively? Do they have the capacity to continue learning throughout life? The OECD Programme for International Student Assessment (PISA) answers these questions and more, through its surveys of 15-year-olds in the principal industrialised countries. Every three years, it assesses how far students near the end of compulsory education have acquired some of the knowledge and skills essential for full participation in society.

About Digital Natives:

An academic research team — joining people from the Berkman Center for Internet & Society at Harvard Law School and the Research Center for Information Law at the University of St. Gallen in Switzerland — is hosting and working on the core of this wiki, which illustrates the beginning stages of a larger research project on Digital Natives.

Are all youth digital natives? Simply put, no. Though we frame digital natives as a generation “born digital,” not all youth are digital natives. Digital natives share a common global culture that is defined not by age, strictly, but by certain attributes and experiences related to how they interact with information technologies, information itself, one another, and other people and institutions. Those who were not “born digital” can be just as connected, if not more so, than their younger counterparts. And not everyone born since, say, 1982, happens to be a digital native. Part of the challenge of this research is to understand the dynamics of who exactly is, and who is not, a digital native, and what that means.

The focus of this research is on exploring the impacts of this generational demarcation between those born with these technologies and those who were not. The project will address the issues and benefits of this digital media landscape and gain valuable insight into how digital natives make sense of their experiences online. This information will help us make recommendations to educators and legislators in a way that supports young people and harnesses the exciting possibilities their digital fluency presents.

Comments and links are welcome.