1. Digital Health II WEBS6202: Further Web Science Catherine Pope 27 April 2015

2. Pre 2000 – potential as information source Hardey, M (1999) SHI 21(6) 820-35 Search, hyperlink and ‘read’ – informed by experience of print media Assembling narratives across multiple sources/sites (context free/user controlled) Challenge to hierarchical health professional expertise (accuracy and quality of information …extending to non- orthodox approaches ) = deprofessionalisation 2

3. Myriad online forms of digital health Health information Accounts (of experience) –Blogs –Visual media - – image sharing Interaction: SNS, Forums CDSS (aimed at patients and professionals) Consumer feedback (corporate versions of the above – e.g. NHS choices) 3

4. ‘first wave’ analyses Internet as novel Separate online sphere of action Threat to professional dominance (patient empowerment) Technical determinism/optimism 4

5. ‘second wave’ Social shaping/co-construction Explore how (web) technology shaping health care/experience of health and illness Link to material and structural determinants /forms of life- e.g. role in enduring health inequalities 5

6. Koteyko N et al. (2015) SHI 37 (3)468–484, Review SNS literature authored by health professionals 1.Communication ‘push’ model for public health promotion (SNS as tools) 2.Marketing tool for (USA) health professionals – sell to individual patients 3.Health consumer, non professional resource - rational model of information seeking to attain goal (empowerment?) 4.dark web - risky and mis-information (vulnerable patient) 6

7. Becki Nash (Web Science cohort 2012) Web that escapes body Web embodied Web as the product of and producing bodies Co-option of the web in modifying and (re) presenting bodies -Information seeking -Sharing/networking -Facilitating consumption 7

8. Ziebland S & Wyke S (2012) Milbank Q 90(2): 219- 249) Realist review exploring potential health effects of use of internet. 7 domains 1.Finding information - about others’ illness experiences 2.Feeling supported –connected to others who are ‘the same’ 3.Maintain relationships 4.Experiencing health services (help navigate) 5.Learn to tell the story – how others’ describe 6.Visualize the disease 7.Change behaviours 8

9. Lisa Sugiura (Web Science cohort 2010) Web as source medicines purchasing -Range of different types of pharmacy -Prescription, non-prescription medicines (and Novel Psychoactive Substances) -Transnational trade -challenges to legal jurisdiction and regulatory extent -Dynamic and difficult to quantify (Posits that this is engendering a new form of deviance) 9

10. Digitally engaged patient (Lupton) Encouraged to take active role in consuming and producing digital information health/medicine …via mobile access to web resources; telemedicine (self monitoring, self care) = Reconfiguring the body o (self)control over the body (disciplining) o visualising the body (informational medicine –Nettleton) – patient co-opted into this o Individualisation (and shift of work onto the patient – burden of treatment theory – Carl May) digitised and virtual representations of the body 10

11. Empower (avoid medical gaze) … Resist or reject (or subvert e.g. pro-ana example)– –this may equally apply to patients and professionals Digitization of patient /body can be understood in context of a wider Neoliberal discourse - shift from state to individual (see Evgeny Morozov’s critiques of this threat to collective solutions and action) Note that this digitization is largely imposed on patients Remember interplay with material and structural forces/constraints and power 11

12. Digitised health data Data produced and created from interactions with Web health platforms and online transactions -‘digital traces’ Beer, D. & Burrows, R. (2013) Popular culture, digital archives and the new social life of data. Theory, Culture & Society 30(4): 47-71. Features = Big data & Naturally occurring data – “In the wild” Prosumption – produce and consume data simultaneously - Ritzer G and Jurgenson N (2010) Production, Consumption, Prosumption: The nature of capitalism in the age of the digital ‘prosumer’ Journal of Consumer Culture March 10 (1): 1 13-36 12

13. Health apps Evidence base Privacy /Ethical issues –Control/opt out? –Employers and insurers access/use of 13

14. PatientsLikeMe http://www.patientslikeme.com/http://www.patientslikeme.com/ HealthUnlocked https://healthunlocked.com/https://healthunlocked.com/ PatientOpinion https://www.patientopinion.org.uk/https://www.patientopinion.org.uk/ 14

15. Commodification “Right now we don’t data-mine healthcare data. If we did we’d probably save 100,000 lives next year.” Larry Page, Google http://www.theguardian.com/technology/2014/jun/26/googl e-healthcare-data-mining-larry-page http://www.theguardian.com/technology/2014/jun/26/googl e-healthcare-data-mining-larry-page Marcin Mycielski, European Parliament (Stansfield) - Own work. Licensed under GFDL via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Larry_Page_in_the_European _Parliament,_17.06.2009.jpg#/media/File:Larry_Page_in_the_Europea n_Parliament,_17.06.2009.jpg 15

16. Power? Many sites and apps created by health care organisations or insurers or big pharma or by tech ‘savvy’ entrepreneurs … not by patients Monetisation / Value to ???? 16

17. Amy Lynch (Web Science Cohort 2013) 1.Engaged patient (incorporate … patients charter 1992) 1993 browser 2.Expert patient (programme 1999) SNS extended 3.Self managing mobile Web …apple watch… 4. Activated ?Foucauldain discursive merger between health policy discourses and web/internet technologies 17