The Nature of the Information Shared by Chronic Patients in Virtual Communities.
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Abstract
People living with a chronic condition tend to go online not only to search for information; they also share what they know (Fox & Purcell, 2010). Virtual communities provide opportunities for people to engage with each other and share their knowledge and expertise of living with a condition trough discussion (Nettleton 2006; Eysenbach et al, 2004).
But, what are the sources of the information they share? Are themselves and their experience? Do they refer to an authority to pose a piece of information?
In this study we set off from Eysenbach’s (2008) framework on apomediation, disintermediation and intermediation environments, to identify how these elements are present in the voice of people participating in virtual communities. We worked with two virtual communities of people living with diabetes that were created and are preserved by patients. They are communities that share software and social organization, but that express themselves in different languages (Spanish and English).
From their main forums and trough conversational analysis we studied 384 threads, with 4,073 posts (197 conversations-2062 posts in English; 187 conversations-1627 posts in Spanish). We found that information on the condition is shared in 89% of the posts in English and 76% in Spanish. The unit of analysis was the post, which was classified within categories developed from Eysenbach’s (2008) framework to identify the voice of authority behind the information they shared. One post could have more than one voice.
An apomediaire voice is present when people share specific pieces of information as if they owned them, in their own words and without mention to an external source. It’s their knowledge, whether practical, medical, scientific, or about their own body and it’s enacted trough interaction. We found an apomediaire voice in 90.2% of the posts in Spanish and in 92.9% of the English ones. That is, primarily, these communities own their knowledge on the condition. Most likely that is because this knowledge is incarnated and entangled in their daily life (Mol and Law, 2004).
An intermediated voice is mainly present when people recommend to ask their doctor or specialist or not to act without his contentment. Intermediation recommendations are present in 15.2% of the Spanish posts and in 11% of the English ones. The presence of this voice is related to the dependence we all have of medical a point of view (O’Neill, 2005)
A disintermediated voice is present in conversations when people show an independent action different to that recommended by the specialist, or when the need or importance to be independent and capable of getting their own information is stressed along with invitations to assume personal responsibility for dealing with their condition. In this case English has the lead with 12.2% of threads, while disintermediation conversations appear only in less than 5% of the threads in Spanish. A difference possibly related to the prevailing power specialists have over patients in Latin America and to the low level of awareness the condition has compared to the USA.
Disintermediation is also present when people share a resource of information that they find useful, like a book, author, page or site. This was registered separately, as it represents filtering information for others. This filtering is present in both communities in 10% of the threads.
People with diabetes tend to have extensive knowledge about their condition, and virtual communities are natural spaces to interchange. Even though intermediation and disintermediation are present as voices when sharing, owning their voice is prevalent. This encourages the need of research of communities of patients, generated and sustained by patients, without the presence of medical specialists (Ferguson and Frydman, 2004).
But, what are the sources of the information they share? Are themselves and their experience? Do they refer to an authority to pose a piece of information?
In this study we set off from Eysenbach’s (2008) framework on apomediation, disintermediation and intermediation environments, to identify how these elements are present in the voice of people participating in virtual communities. We worked with two virtual communities of people living with diabetes that were created and are preserved by patients. They are communities that share software and social organization, but that express themselves in different languages (Spanish and English).
From their main forums and trough conversational analysis we studied 384 threads, with 4,073 posts (197 conversations-2062 posts in English; 187 conversations-1627 posts in Spanish). We found that information on the condition is shared in 89% of the posts in English and 76% in Spanish. The unit of analysis was the post, which was classified within categories developed from Eysenbach’s (2008) framework to identify the voice of authority behind the information they shared. One post could have more than one voice.
An apomediaire voice is present when people share specific pieces of information as if they owned them, in their own words and without mention to an external source. It’s their knowledge, whether practical, medical, scientific, or about their own body and it’s enacted trough interaction. We found an apomediaire voice in 90.2% of the posts in Spanish and in 92.9% of the English ones. That is, primarily, these communities own their knowledge on the condition. Most likely that is because this knowledge is incarnated and entangled in their daily life (Mol and Law, 2004).
An intermediated voice is mainly present when people recommend to ask their doctor or specialist or not to act without his contentment. Intermediation recommendations are present in 15.2% of the Spanish posts and in 11% of the English ones. The presence of this voice is related to the dependence we all have of medical a point of view (O’Neill, 2005)
A disintermediated voice is present in conversations when people show an independent action different to that recommended by the specialist, or when the need or importance to be independent and capable of getting their own information is stressed along with invitations to assume personal responsibility for dealing with their condition. In this case English has the lead with 12.2% of threads, while disintermediation conversations appear only in less than 5% of the threads in Spanish. A difference possibly related to the prevailing power specialists have over patients in Latin America and to the low level of awareness the condition has compared to the USA.
Disintermediation is also present when people share a resource of information that they find useful, like a book, author, page or site. This was registered separately, as it represents filtering information for others. This filtering is present in both communities in 10% of the threads.
People with diabetes tend to have extensive knowledge about their condition, and virtual communities are natural spaces to interchange. Even though intermediation and disintermediation are present as voices when sharing, owning their voice is prevalent. This encourages the need of research of communities of patients, generated and sustained by patients, without the presence of medical specialists (Ferguson and Frydman, 2004).
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