Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine

Schaffer, Rebecca; Kuczynski, Kristine J.; Skinner, Debra

doi:10.1111/j.1467-9566.2007.01042.x

Cited by 100 publications

(92 citation statements)

References 25 publications

(35 reference statements)

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“…Research on peer-to peer interaction in virtual communities suggests that these too can reinforce mainstream discourses of medical knowledge (Fox et al, 2005;Sandaunet, 2008). At the same time, they can address issues not dealt with (or at least not to individuals' satisfaction) in traditional settings (Sandaunet, 2008;Schaffer et al, 2008). The emergent body of literature on online health communities in general supports a model of 'empowerment within limits' where the individual user has the opportunity to feel more competent or in control through the peer-led exchange of information and emotionally supportive messages, within the cultural constraints of the particular community being accessed.…”

mentioning

confidence: 99%

‘Oh dear, should I really be saying that on here?’: Issues of identity and authority in an online diabetes community

Armstrong¹,

Koteyko

Powell

2011

Health (London)

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We explore peer-to-peer discussions which took place in a UK-based diabetes 'Virtual Clinic' online community. In particular, we seek to understand the rhetorical nature and content of exchanges over a period of six months from the community's inception. Data were captured weekly and analysis based on thematic discourse analysis. Two key issues emerged regarding how the community shaped the nature of the discussion forum. First, the identity of the forum was established, and boundaries drawn about what was, and was not, acceptable. Second, participants sought to present themselves as reliable and authoritative sources of information. Internet discussion communities are shaped in important ways early on by the community of users, including how the character and focus of discussion is formed, and how both information and users can be constructed as authoritative and reliable.

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mentioning

confidence: 99%

‘Oh dear, should I really be saying that on here?’: Issues of identity and authority in an online diabetes community

Armstrong¹,

Koteyko

Powell

2011

Health (London)

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“…A pesquisa sobre o impacto da internet na experiência de portadores de doenças -sobretudo aquelas envoltas em incertezas quanto à etiologia -é assunto em plena expansão no campo do conhecimento sociológico em saúde (Conrad, Stults, 2010;Barker, 2008;Bromm, Tovey, 2008;Miah, Rich, 2008;Schaffer, Kuczynski, Skinner, 2008;Berger, Wagner, Baker, 2005;Broom, 2005;Fox, Ward, o'Rourke, 2005a, 2005bSeale, 2005;Gandchoff, 2004;Gillet, 2003;Blumenthal, 2002;Hardey, 1999).…”

Section: Introductionunclassified

A construção do diagnóstico do autismo em uma rede social virtual brasileira

Ortega

Zorzanelli

Meierhoffer

et al. 2013

Interface (Botucatu)

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Este artigo apresenta alguns resultados de uma pesquisa realizada em uma rede social virtual brasileira, com o tema do autismo. Investigou-se a opinião pública sobre o autismo nessa rede, por meio de suas comunidades ligadas ao assunto. A opinião pública sobre determinada condição médica traz consequências diretas sobre a experiência do doente e sobre as pessoas implicadas em cuidar dos pacientes acometidos. Os resultados apontam algumas direções a respeito das representações dos usuários sobre as supostas causas da doença, os métodos de tratamento, as formas de ativismo e de busca de direitos dos portadores, e os usos paradoxais do conhecimento médico, ao qual se atribui a possibilidade de desvendar a doença, e, ao mesmo tempo, é alvo de resistência de pais e cuidadores, que priorizam o conhecimento proveniente de sua experiência cotidiana com os autistas.

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“…As already mentioned, health-related information shared in social networks takes a number of forms, including medical evidence, personal experience and opinion. Social networks and professional networks can both contribute to refining medical evidence (Schaffer et al, 2007). Experiential information from individuals with apparently the same illness will vary -in a social network we argue that one type of experience can come to dominate or the variation can lead to the elicitation of further information.…”

Section: A C C E P T E D Accepted Manuscriptmentioning

confidence: 99%

“…As Fox et al (2005) note, consequences include the emergence of online expert patient groups and the discovery of community around particular health conditions and states, such as Alzheimer's disease (White & Dorman, 2000), cancer (Turner et al, 2001), Asperger's syndrome (Mitchell, 2003) and childhood genetic disabilities (Schaffer et al, 2007). For those living with the demands of a chronic M A N U S C R I P T…”

Section: Social Network and Health-related Informationmentioning

confidence: 99%

“…Schaffer et al (2007) studied the mothers of genetically disabled children and explored the strategies they used to develop specialist knowledge. These included working online to produce scientific knowledge and disseminating this knowledge through social networks and professional networks in order to ensure access to the best possible treatment for their children.…”

Section: A C C E P T E D Accepted Manuscriptmentioning

confidence: 99%

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Social networks – The future for health care delivery

Griffiths

Cave

Boardman

et al. 2012

Social Science & Medicine

171

126

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• Health care information of value for improving health care is being assembled through digitally enhanced social networks• Social networking allows patients to control health information accrual without the constraints of traditional health care• The doctor-patient encounter is more influenced by information from social and professional networks than in the past• Social networking has the potential to change the pattern of health inequalities and access to health care• The stability of health care provision and the traditional role of professionals face challenges from social networking AbstractWith the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity. This is not necessarily a drawback; self-organising, adaptive networks could become central to future health care delivery. This paper considers whether social networks composed of patients and their social circles can compete with, or complement, professional networks in assembling healthrelated information of value for improving health and health care. Using the framework of analysis of a two-sided network -patients and providers -with multiple platforms for interaction, we argue that the structure and dynamics of such a network has implications for future health care. Patients are using social networking to access and contribute health information. Among those living with chronic illness and disability and engaging with social networks, there is considerable expertise in assessing, combining and exploiting information. Social networking is providing a new landscape for patients to assemble health information, relatively free from the constraints of traditional health care.However, health information from social networks currently complements traditional sources rather than substituting for them. Networking among health care provider organisations is enabling greater exploitation of health information for health care planning. The platforms of interaction are also changing. Patient-doctor encounters are now more permeable to influence from social networks and professional networks.Diffuse and temporary platforms of interaction enable discourse between patients and professionals, and include platforms controlled by patients. We argue that social networking has the potential to change patterns of health inequalities and access to health M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT 2 care, alter the stability of health care provision and lead to a reformulation of the role of health professionals. Further research is needed to understand how network structure combined with its dynamics will affect the flow of information and potentially the allocation of health care resources.

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Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine

Cited by 100 publications

References 25 publications

‘Oh dear, should I really be saying that on here?’: Issues of identity and authority in an online diabetes community

‘Oh dear, should I really be saying that on here?’: Issues of identity and authority in an online diabetes community

A construção do diagnóstico do autismo em uma rede social virtual brasileira

Social networks – The future for health care delivery

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