From paper to the digital: Towards a conceptualisation of the mediation of health information Michael Hardey and Sarah Nettleton Hull/York Medical School and Dept Sociology York University BSA Medical Sociology 2008

Information in Conext We have good detailed descriptions and empirical studies about health and the Internet. This is an attempt to provide a broader socio-historical context to the role of the Internet: We considerer the nature of mediated health information. W e attempt to identify new ways in which information is created and consumed.

We have good detailed descriptions and empirical studies about health and the Internet.

This is an attempt to provide a broader socio-historical context to the role of the Internet: We considerer the nature of mediated health information. W e attempt to identify new ways in which information is created and consumed.

The Internet as new media Reminds us that in the past we had other forms of information that was more or less available to authors and audiences - for example: Print media was ‘new’ - the book Newspapers and magazines Radio and TV

Reminds us that in the past we had other forms of information that was more or less available to authors and audiences - for example:

Print media was ‘new’ - the book

Newspapers and magazines

Radio and TV

Two dimensions Authoritative health discourse Availability of information

Authoritative health discourse

Availability of information

The ‘Authorised Health Discourse’ AHD We view health information in relation to the power/knowledge claims of medicine. Discourse reflects the way meaning is embedded in language in that concepts like health, illness and disease become a set of knowledge, expertise and techniques are called upon to, for example, fight disease or shape public health interventions. The term ‘health’ is used in recognition of the way our understandings of health and illness are shaped by a implicate or explicit acknowledgement of medicine knowledge. AHD is also a professional discourse that privileges expert knowledge and values about health and illness. Consequent power relationships identify those who have the authority to represent medicine and those who do not. AHD works to identify particular forms of knowledge that may be used to create or shape information about health.

We view health information in relation to the power/knowledge claims of medicine.

Discourse reflects the way meaning is embedded in language in that concepts like health, illness and disease become a set of knowledge, expertise and techniques are called upon to, for example, fight disease or shape public health interventions.

The term ‘health’ is used in recognition of the way our understandings of health and illness are shaped by a implicate or explicit acknowledgement of medicine knowledge.

AHD is also a professional discourse that privileges expert knowledge and values about health and illness.

Consequent power relationships identify those who have the authority to represent medicine and those who do not.

AHD works to identify particular forms of knowledge that may be used to create or shape information about health.

AHD – an example The public health concern about obesity is constructed from biomedical knowledge that generated the Body Mass Index (BMI, kg/m²). There are many critiques of what WHO (1998) identified as the global obesity epidemic . But in shaping health policy or the doctor/patient consultation the boundaries around claims to expertise become tightly drawn (for example, Campos, 2004). AHD processes work here to limit broader debate and information by rendering critics as either ill-informed, misguided, or ‘political’ in that they advocate a bodily form and lifestyle that is unhealthy, risky and open to stigma (Aphramor, 2005).

The public health concern about obesity is constructed from biomedical knowledge that generated the Body Mass Index (BMI, kg/m²).

There are many critiques of what WHO (1998) identified as the global obesity epidemic .

But in shaping health policy or the doctor/patient consultation the boundaries around claims to expertise become tightly drawn (for example, Campos, 2004).

AHD processes work here to limit broader debate and information by rendering critics as either ill-informed, misguided, or ‘political’ in that they advocate a bodily form and lifestyle that is unhealthy, risky and open to stigma (Aphramor, 2005).

Information Mediated health information is diverse and includes: Books, newspapers, magazines, radio, TV and the Internet. Print media was once ‘new’ - expensive and limited to those who could read. Now information is so plentiful we have ‘infoglut’ or suffer from ‘information obesity’.

Mediated health information is diverse and includes: Books, newspapers, magazines, radio, TV and the Internet.

Print media was once ‘new’ - expensive and limited to those who could read.

Now information is so plentiful we have ‘infoglut’ or suffer from ‘information obesity’.

A typology of mediated information - four ideal types AHD (weaker) AHD (stronger) Information Scarce Pluralism (‘The past’) 2. Professionalism (1900 – 1960s) Information Rich 3. Proliferation (1970s - 1999) 4. Percolation (2000 - the future?)

Pluralism

(‘The past’)

1. Pluralism Multiple sources of more or less incoherent authoritative knowledge and information scarce for the masses. Competing producers of information vying for authority e.g. astrologists - almanac and medicine - anatomical text (cf Wright, 1979). Few users due to literacy rates.

Multiple sources of more or less incoherent authoritative knowledge and information scarce for the masses.

Competing producers of information vying for authority e.g. astrologists - almanac and medicine - anatomical text (cf Wright, 1979).

Few users due to literacy rates.

Professionalism The ‘golden age’ of medicine. Parsons - sick role. Starr - the ‘sovereign profession’. Users as ‘deferent’ and ‘obedient’ to AHD. Pamphlets providing advice and ‘book of family medicine’ safely stored in the home. ‘ Lord Hill became popular for his wartime broadcasts as the BBC's Radio Doctor, in which he discussed health problems in lay language’ (BBC Web site).

The ‘golden age’ of medicine.

Parsons - sick role.

Starr - the ‘sovereign profession’.

Users as ‘deferent’ and ‘obedient’ to AHD.

Pamphlets providing advice and ‘book of family medicine’ safely stored in the home.

‘ Lord Hill became popular for his wartime broadcasts as the BBC's Radio Doctor, in which he discussed health problems in lay language’ (BBC Web site).

3. Proliferation Consumerism, social movements etc challenge medical hegemony re-emergence of alternatives ‘medical pluralism’, reflexive modernisation. Users as ‘questioning’ and seeking wellness – not just the avoidance of illness. AHD questioned, yet need to know what was ‘reliable’ health information. Medical profession ‘re-professionalised’ (Lupton 1997). Anxieties, ‘panic’ re dissemination of ‘risky information’ from sources such as the Internet.

Consumerism, social movements etc challenge medical hegemony re-emergence of alternatives ‘medical pluralism’, reflexive modernisation.

Users as ‘questioning’ and seeking wellness – not just the avoidance of illness.

AHD questioned, yet need to know what was ‘reliable’ health information.

Medical profession ‘re-professionalised’ (Lupton 1997).

Anxieties, ‘panic’ re dissemination of ‘risky information’ from sources such as the Internet.

4. Percolation Evidence based culture and reasserted ‘scientific’ basis of AHD. Health ‘problems’ defined through AHD e.g. smoking and obesity crisis. Citizens responsible for own health and expected to make ‘healthy’ lifestyle choices – which are informed via AHD.

Evidence based culture and reasserted ‘scientific’ basis of AHD.

Health ‘problems’ defined through AHD e.g. smoking and obesity crisis.

Citizens responsible for own health and expected to make ‘healthy’ lifestyle choices – which are informed via AHD.

Why ‘percolation’ ? ‘ … how can such highly rational production result in the incredible irrationality of information overloads, misinformation, disinformation and out-of-control information. At stake is a disinformed information society .’ (Lash 2002 p.2).

‘ … how can such highly rational production result in the incredible irrationality of information overloads, misinformation, disinformation and out-of-control information. At stake is a disinformed information society .’ (Lash 2002 p.2).

The percolation process Media convergence and ‘software sorting’ (Thrift) and ‘ordering’ of digital information; processes co-construction of hierarchies - commercially influenced and automatic sorting. Web 2.0 and personalisation - tailoring of information needs - (e.g. shared book marking del.i.cous which is recursive as people can share bookmarks). Information diverse but increasingly ‘sorted out’- filtered - and stratified though AHD.

Media convergence and ‘software sorting’ (Thrift) and ‘ordering’ of digital information; processes co-construction of hierarchies - commercially influenced and automatic sorting.

Web 2.0 and personalisation - tailoring of information needs - (e.g. shared book marking del.i.cous which is recursive as people can share bookmarks).

Information diverse but increasingly ‘sorted out’- filtered - and stratified though AHD.

Web 2.0 Blogs, SNSs, etc provide new ways for people to read/write about health. User generated review sites - ‘RateMD’, ‘Patient Opinion’ - constitute ways users can read/write comments about identified practitioners and services. Information created by ever more authors – You Tube – Podcasts - Blogs. AHD becomes more important as a way of ‘sorting information out’.

Blogs, SNSs, etc provide new ways for people to read/write about health.

User generated review sites - ‘RateMD’, ‘Patient Opinion’ - constitute ways users can read/write comments about identified practitioners and services.

Information created by ever more authors – You Tube – Podcasts - Blogs.

AHD becomes more important as a way of ‘sorting information out’.

Conclusion Information about health reflects greater consumerism and need to make ‘responsible’ - informed - choices. Information increasingly feeds back to health care institutions e.g. ‘Patient Opinion’ sends comments to ‘quality mangers’ in NHS. AHD increasingly shapes choices but it may also increasingly acknowledge or incorporate consumer information e.g. user reviews – Google ‘health record’.

Information about health reflects greater consumerism and need to make ‘responsible’ - informed - choices.

Information increasingly feeds back to health care institutions e.g. ‘Patient Opinion’ sends comments to ‘quality mangers’ in NHS.

AHD increasingly shapes choices but it may also increasingly acknowledge or incorporate consumer information e.g. user reviews – Google ‘health record’.