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.
