Natalia Pletneva*, University Deusto, Bilbao, Spain Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: MECC Room: 0.9 Athens Date: 2010-11-30 10:30 AM – 12:00 PM Last modified: 2010-09-21

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Background: Due to the tremendous growth of informational-communicational technologies (ICT) applications in healthcare and constantly increasing patients demand for illness-related information and support, there is a need for the healthcare stakeholders to understand and use the modern tools for the patients’ benefit. Taking into account that each region varies one from each other culturally (including language barrier) and economically (including digital divide issue) it is necessary to design the tools serving the needs of a specific population.
Objective: understand the current situation towards different tools of health 2.0 used to meet chronic patients informational and social needs, prioritize them in the context of Basque country (BC), Spain, design the web-source accordingly.
Methods: Collecting and analysing the international (mostly English and Spanish language-based) experiences of online chronic patients communities, elaborating the typology of the tools used for the chronic patients, questionnaires and interviews of the patients associations representing the most spread chronic diseases in BC (qualitative analysis), design proposal of 2.0 web site for the patients with chronic conditions.
Results: Analysing the world experience, the following tools demanded by the chronic patients have been identified: information, forums, personal health record (PHR), self-management applications, on-line consultations with the doctors, ratings, social and legal consulting, directory. In BC the major demand is the safe access to reliable information concerning the disease and treatment in a plain language. Another issue is a platform for communication with other patients and support, consultations with the doctor, psychologist, social worker and lawyer. However, all the respondents note that forums require strict moderation to avoid misleading information. Patients trust in ICT use still needs to be increased to engage into the use of personal tools such as PHR. There is a significant difference between the age of Basque Internet users and age of the majority of chronic patients. For a further research in this area it might be more valid to organize patient’s focus groups, based on a voluntary participation in order to differentiate the opinions between individuals and associations.
Conclusions: Despite the optimistic prognosis, among the chronic patients ICT trust including health-related applications is relatively low. It is quite possible that due to relatively small Basque population (2 mln.), issues of privacy would play an important role for a long time, underlying non-participation. In general, society is quite conservative and worried about safety and reliability of Internet. Nevertheless the opinions vary from the conservatives to the progressive ones due to different age groups of chronic patients in BC. There are some examples of proactive patients having blogs and participating actively in the movement who would push further health 2.0 development. Within few years the demand for mentioned and other tools will increase with a major amount of ICT-users due to the growing trend of usage of new technologies as well as the appearance of younger generations of chronic patients.