Health e-citizenship? Sociotechnical systems and self care

1. Health e-citizenship? Sociotechnical systems and self care Seminar at HCT group, Sussex University Feb 9th 2007

2. The project • The funding programme: • ‘The Role of Technology in Supporting Chronic Disease Management, Self Care and Healthy Living’. • Department of Health, Information and Communication Technologies Research Initiative 2

3. Project diagram

4. Beyond the dualism in e-health discourse • under what circumstances can engagement with e-Health systems facilitate active citizenship? • what sociotechnical configurations are able to produce and/or support active citizenship in an e-health context?

5. The approach • ‘Social informatics’ informed by STS • Technologies are always already social as in ‘sociotechnical’ systems • Implications of this thinking for research, policy and practice in ‘e-health’ field, specifically re: ‘self-care’

6. ‘E-health’ discourse • Combines: • ‘New public health’ discourse • ‘E-society’ discourse • How are users configured in each? • Consumers or citizens?

7. The new public health • Peterson and Lupton 1996 • ‘Self care’ can be understood as aspect of the NPH: • Welfarist to neo-liberal politics in health care • Patient to consumer • New active consumer of health care shows capacity for independent decision-making and a readiness to put information to use (Brock, 1995) • Rights and duties

8. Self care and the good consumer • ‘The “good consumer” of health care is compelled to make choices, to exhibit appropriate “information seeking” behaviour, and to behave in certain prescribed ways (consulting “relevant” expertise, taking the “right” medicine, engaging in personal risk management, and so on) (Henderson and Peterson, 2002, p. 3).

9. Compulsion, imperative (and resistance?) • An opportunity becomes an obligation • A right becomes a responsibility • Production of good and bad citizens/good and bad health care consumers • Is there room to resist this dualism, to offer new meanings, and to effect change in line with self-defined goals?

10. E-society discourse • Progressive nature of technologies • Rights to access becomes a duty to do so • Non-users seen as problem to be fixed • Voluntary non-use rarely addressed • Usefulness assumed and focus is on usability • Skills training rather than a more critical ‘e-literacy’

11. The problem (and the solution?) • ‘The consumerist foundations of much information society discourse have profoundly anti-democratic implications’ (Day, 2001, p. 311) and • ‘enabling local communities to engage in the shaping and utilisation of technologies in the information society is an important step towards a more inclusive society’ (ibid, p. 318).

12. How to engage communities in ICTs? • Community service and community practice models (Glen, 1993) • Interventions as participatory approaches • Indirect introductions to ICTs- build on existing interests, as in Lave and Wenger’s ‘social learning’ approach (1991)

13. But…. • this may ignore one of most interesting characteristics of new technologies- • ‘that they might create new uses and patterns of social interaction that were not at all obvious at an early stage and which may be overlooked by those who argue just by an analogy from old technologies’ (Liff and Steward, 2001, p. 340).

14. Boundary spanning • ‘materials which support forms of boundary spanning which focus on allowing non-users to understand more of the world of ….users, opportunities for interactions over a longer period between new users and those who are more experienced, and perhaps the development of a stronger sense of collective identity among those running and promoting e-gateways’ (Liff and Steward, 2001, p. 340).

15. Participatory learning workshops? • ‘Learning contexts and materials need to build in opportunities for people to get to know each other, to identify links and shared interests and to encourage opportunities for collaboration or mutual help, rather than just working through pre-defined courses in isolation’ (Liff and Steward, 2001, p. 341).

16. Digital inequality vs digital divide • ‘digital divide’ refers to disparities in the structure of access to and use of ICTs • ‘digital inequality’ is a broader concept, reflecting the ways in which longstanding social inequities shape beliefs and expectations regarding ICT and its impacts on life chances (Kvasny, 2006, p. 160). • ‘To understand digital inequality, the ICT has to be placed into the system of social relations that define and sustain its cultural meanings and intended uses’ (Kvasny, 2006, p. 163).

17. Beginnings and endings • What are the problems to which e-Health solutions are they solution? • Does the focus on access to health information in e-Health discourse come at the expense of a focus on access to health care? • How are e-Health system users engaging with information? • How are e-Health system users engaging with the technology? • Is health information seeking simply a rational process? • What can this interventionist project contribute to action-oriented STS?

18. Achieving ‘fit’ in sociotechnical networks • Machines only ‘work’ because they have been accepted by relevant social groups (Bijker, Hughes and Pinch, 1987) • the fate of …machines is in later users’ hands; their qualities are thus a consequence, not a cause, of collective action (Latour, 1992).

19. Beginnings and endings • What are the problems to which e-Health solutions are they solution? • Does the focus on access to health information in e-Health discourse come at the expense of a focus on access to health care? • How are e-Health system users engaging with information? • How are e-Health system users engaging with the technology? • Is health information seeking simply a rational process? • What can this interventionist project contribute to action-oriented STS?

20. Research Team • Flis Henwood (Project Director) • Audrey Marshall and Liz Guy (CMIS) • Leslie Carlin and Helen Smith (BSMS) • Mark Walker (SCIP and independent community IT consultant) • Laura Bottomley- Project Administrator Contact: f.henwood@bton.ac.uk; L.M.Bottomley@bton.ac.uk