Mme Sally WYATT ROYAL NETHERLANDS ACADEMY & MAASTRICHT UNIVERSITY

1. Mme Sally WYATT ROYAL NETHERLANDS ACADEMY & MAASTRICHT UNIVERSITY

2. Santé, internet, information

4. Intermediary – transports meaning without transformation – a black box counting for one Mediators – input never a good predictor of output – they transform, translate, distort & modify – however simple it may look, it can lead in multiple directions Bruno Latour (2005:39) Reassembling the Social, OUP.

5. The clean pipeline: idealised view of information intermediaries

6. The messy reality of finding health information

7. Alternative health care information • Commercial product information • Commonly -held beliefs (‘folk remedies’, etc.) • Conjecture • Epidemiologic data • Experience of others • Government policy • Medical information • Opinions • Own embodied experience • Pharmaceutical product information • Research/scientific evidence • Superstition • Beauty and& fitness industry • Health food industry Sources of Health Information Health Info(r)mediators Health Information Seekers’ Needs • Legal regimes, policies • Western medical care providers, including pharmacists • Allied health care (& social service) providers • Complementary & alternative health care providers • Traditional healers • Peer / para-professional support workers • Libraries, librarians & other information professionals • Newspapers, magazines & other print media • Television, radio & other broadcast media • Health information websites & portals • Online social support sites • Friends & family • Medical images, electronic health records & other health informatics applications • Filters, search engines & other software applications How does the information match my previous knowledge? How badly do I need the information? What do I need it for? (e.g., making a specific decision; emotional support; corroboration of a diagnosis; etc.). Is the information consistent with my beliefs and values? How urgent is the situation? How familiar am I with the topic? How easy is it to apply the information to my situation? Am I ready to believe what I find? Am I ready to act on it? Do I the need information for myself or another person?

8. Info(r)mediators – visibility continuum VISIBLE INVISIBLE Librarians Legal Regimes Libraries Friends, family, etc. Internet Search Engines Health Care Providers Internet Content Filters Diagnostic Images Community Health Workers Websites

9. Types of health information seeker Band-aid internet use Looking up/checking out Doing research Constraints experienced by patients Patients reluctant to take on role Lack of skills and competences for information literacy Health care professionals reluctant to let patients take on role What does this mean for policy agenda about ‘information for choice’? Emergence of the informed patient?

10. New patient responsibilities Sharing health information Sharing health experiences Sharing experiences of health care provision Who benefits? Evidence for what and for whom? Legal and ethical constraints Web 2.0

11. Using the internet to find and share health information is not a linear process. Different ways of using the internet need to be understood in terms of different types of users and also in relation to different temporal and social trajectories. Health, well-being, ageing, changing jobs, moving house all affect how people, individually and collectively, use the internet. Vive la différence!