6,229
Views
35
CrossRef citations to date
0
Altmetric
Articles

Health activism and the logic of connective action. A case study of rare disease patient organisations

&
Pages 1653-1671 | Received 28 Jul 2015, Accepted 05 Feb 2016, Published online: 21 Mar 2016

References

  • Abma, T. A. (2006). Patients as partners in a health research agenda setting: The feasibility of a participatory methodology. Evaluation of Health Professions, 29, 424–439. doi: 10.1177/0163278706293406
  • Aymé, S., Kole, A., & Graft, S. (2008). Empowerment of patients: Lessons from the rare diseases community. Lancet, 371, 2048–2051. doi: 10.1016/S0140-6736(08)60875-2
  • Balka, E., Krueger, G., Holmes, B. J., & Stephen, J. E. (2010). Situating internet use: Information-seeking among young women with breast cancer. Journal of Computer-Mediated Communication, 15, 389–411. doi: 10.1111/j.1083-6101.2010.01506.x
  • Barbot, J. (2006). How to build an ‘active’ patient? The work of AIDS associations in France. Social Science & Medicine, 62, 538–551. doi: 10.1016/j.socscimed.2005.06.025
  • Bennett, W. L. (2003). Communicating global activism: Strengths and vulnerabilities of networked politics. Information, Communication & Society, 6(2), 143–168. doi: 10.1080/1369118032000093860a
  • Bennett, W. L., & Segerberg, A. (2012). The logic of connective action. Information, Communication & Society, 15(5), 739–768. doi: 10.1080/1369118X.2012.670661
  • Bennett, W. L. & Segerberg, A. (2013). The logic of connective action. Digital media and the personalization of contentious politics. Cambridge: Cambridge University Press.
  • Bimber, B., Flanagin, A., & Stohl, C. (2005). Reconceptualizing collective action in the contemporary media environment. Communication Theory, 15, 389–413. doi: 10.1111/j.1468-2885.2005.tb00340.x
  • Boogerd, E. A., Arts, T., Engelen, L. J. L. P. G., & van de Belt, T. H. (2015). ‘What is eHealth’: Time for an update? JMIR Research Protocols, 4(1), e29. doi: 10.2196/resprot.4065
  • Borkman, T. (1976). Experiential knowledge: A new concept for the analysis of self-help groups. Social Service Review, 50(3), 445–456. doi: 10.1086/643401
  • Brown, P., Adams, C., Morello-Frosch, R., Senier, L., & Simpson, R. (2010). Health social movements: History, current work and future direction. In Chloe E. Bird, Peter Conrad, Allen M. Fremont, & Stefan Timmermans (Eds.), Handbook of medical sociology (pp. 380–394). Nashville, TN: Vanderbilt University Press.
  • Brown, P., & Zavestoski, S. (2004). Social movements in health: An introduction. Sociology of Health & Illness, 26(6), 679–694. doi: 10.1111/j.0141-9889.2004.00413.x
  • Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., & Gasior Altman, R. (2004). Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness, 26(12), 50–80. doi: 10.1111/j.1467-9566.2004.00378.x
  • Caron-Flinterman, J. F., Broerse, J. E. W., & Bunders, J. F. G. (2005). The experiential knowledge of patients: A new resource for biomedical research? Social Science & Medicine, 60, 2575–2584. doi: 10.1016/j.socscimed.2004.11.023
  • Caron-Flinterman, J. F., Broerse, J. E. W., & Bunders, J. F. G. (2007). Patient partnership in decision-making on biomedical research: Changing the network. Science Technology Human Values, 32, 339–368. doi: 10.1177/0162243906298354
  • Cohen, J. H., & Raymond, J. M. (2011). How the internet is giving birth (to) a new social order. Information, Communication & Society, 14(6), 937–957. doi: 10.1080/1369118X.2011.582132
  • Cordner, A., Brown, P., & Morello-Frosch, R. (2014). Health social movements. In W. Cockerham, R. Dingwall, & S. Quah (Eds.), Wiley-blackwell encyclopedia of health, illness, behavior, and society, (pp. 1115–1120). Chichester: Wiley-Blackwell. doi: 10.1002/9781118410868.wbehibs441
  • Dahlgren, P. (2015, March 19). Political engagement: Charting rational and affective dimensions. Paper presented at Media Engagement International Conference, Lund.
  • Epstein, S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology & Human Values, 20(4), 408–437. doi: 10.1177/016224399502000402
  • Epstein, S. (1996). Impure science: AIDS, activism and the politics of knowledge. Berkeley: University of California Press.
  • Eurordis. Retrieved November 12, 2015, from http://www.eurordis.org
  • Eysenbach, G. (2001). What is e-Health? Journal of Medical Internet Research, 3(2), e20. doi: 10.2196/jmir.3.2.e20
  • Eysenbach, G., & Kohler, C. (2002). How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. BMJ, 324(7337), 573–577. doi: 10.1136/bmj.324.7337.573
  • Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ, 328, 1166. doi: 10.1136/bmj.328.7449.1166
  • Fox, S. (2011). Peer-to-peer healthcare. Many people – especially those living with chronic or rare diseases – use online connections to supplement professional medical advice [Pew Internet & American Life Project]. Retrieved November 12, 2015, from http://www.pewinternet.org/files/oldmedia//Files/Reports/2011/Pew_P2PHealthcare_2011.pdf
  • Franzosi, R. (2004). From words to numbers. Narrative, data, and social science. Cambridge: Cambridge University Press.
  • Freeman, L. C. (1979). Centrality in social networks: Conceptual clarification. Social Networks, 1, 215–239. doi: 10.1016/0378-8733(78)90021-7
  • Gerbaudo, P. (2012). Tweets and the streets: Social media and contemporary activism. London: Pluto Press.
  • Greene, J. A., Choudhry, N. K., Kilabuk, E., & Shrank, W. H. (2011). Online social networking by patients with diabetes: A qualitative evaluation of communication with Facebook. Journal of General Internal Medicine, 26(3), 287–292. doi: 10.1007/s11606-010-1526-3
  • Gustafson, D. H., McTavish, F. M., Stengle, W., Ballard, D., Jones, E., Julesberg, K., … Hawkins, R. (2005). Reducing the digital divide for low income women with breast cancer: A feasibility study of a population-based intervention. Journal of Health Communication, 10(7), 173–193. doi: 10.1080/10810730500263281
  • Hans, O., Carlos, R., Murray, E., & Alejandro, J. (2005). What is eHealth (3): A systematic review of published definitions. Journal of Medical Internet Research, 7(1), e1.
  • Hsu, J., Huang, J., Kinsman, J., Fireman, B., Miller, R., Selby, J., & Ortiz, E. (2005). Use of e-health services between 1999 and 2002: A growing digital divide. Journal of the American Medical Informatics Association, 12(2), 164–171. doi: 10.1197/jamia.M1672
  • Kallinikos, J., & Tempini, N. (2014). Patient data as medical facts: Social media practices as a foundation for medical knowledge creation. Information Systems Research, 25(4), 817–833. doi: 10.1287/isre.2014.0544
  • Landzelius, K. (2006). Introduction: Patient organisation movements and new metamorphoses in patienthood. Social Science & Medicine, 62, 529–537. doi: 10.1016/j.socscimed.2005.06.023
  • Mackert, M., Champlin, S. E., Holton, A., Muñoz, I. I., & Damásio, M. J. (2014). eHealth and health literacy: A research methodology review. Journal of Computer-Mediated Communication, 19, 516–528. doi: 10.1111/jcc4.12044
  • Mager, A. (2009). Mediated health: Sociotechnical practices of providing and using online health information. New Media and Society, 11(7), 1123–1142. doi: 10.1177/1461444809341700
  • McCormick, S., Brown, P., & Zavestoski, S. (2003). The personal is scientific, the scientific is political: The public paradigm of the environmental breast cancer movement. Sociological Forum, 18(4), 545–576. doi: 10.1023/B:SOFO.0000003003.00251.2f
  • NORD. Retrieved November 12, 2015, from https://www.rarediseases.org
  • Oh, H., Rizo, C., Enkin, M., & Jadad, A. (2005). What is eHealth (3): A Systematic review of published definitions. Journal of Medical Internet Research, 7(1), e1. doi: 10.2196/jmir.7.1.e1
  • Owen, J. E., Boxley, L., Goldstein, M. S., Lee, J. H., Breen, N., & Rowland, J. H. (2010). Use of health-related online support groups: Population data from the California health interview survey complementary and alternative medicine study. Journal of Computer-Mediated Communication, 15, 427–446. doi: 10.1111/j.1083-6101.2010.01501.x
  • Pezzullo, P. C. (2003). Resisting ‘national breast cancer awareness month’: The rhetoric of counterpublics and their cultural performances. Quarterly Journal of Speech, 89(4), 345–365. doi: 10.1080/0033563032000160981
  • Putnam, R. D. (2000). Bowling alone. New York: Free Press.
  • Rabeharisoa, V. (2003). The struggle against neuromuscular diseases in France and the emergence of the ‘partnership model’ of patient organisation. Social Science & Medicine, 57, 2127–2136. doi: 10.1016/S0277-9536(03)00084-4
  • Rabeharisoa, V. (2006). From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France. Social Science & Medicine, 62, 564–576. doi: 10.1016/j.socscimed.2005.06.036
  • Rogers, R. (2004). Information politics on the web. Cambridge, MA: MIT Press.
  • Rogers, R. (2013). Digital methods. Cambridge, MA: MIT Press.
  • Scambler, G., & Kelleher, D. (2006). New social and health movements: Issues of representation and change. Critical Public Health, 16(3), 219–231. doi: 10.1080/09581590600986440
  • Tempini, N. (2015). Governing PatientsLikeMe: Information production and research through an open, distributed, and data-based social media network. The Information Society: An International Journal, 31(2), 193–211. doi: 10.1080/01972243.2015.998108
  • Terry, S. F., & Patrick-Lake, B. (2015). Hearing voices: FDA seeks advice from patients. Science Translational Medicine, 7(313), 313ed12. doi: 10.1126/scitranslmed.aad5866
  • Thompson, A. G. H. (2007). The meaning of patient involvement and participation in health care consultations: A taxonomy. Social Science & Medicine, 64, 1297–1310. doi: 10.1016/j.socscimed.2006.11.002
  • Vartabedian, B. (2015). The public physician. Practical wisdom for life in a connected, always-on world. Retrieved November 12, 2015, from https://itunes.apple.com/us/book/the-public-physician/id997209942?mt=11/
  • Whittaker, R., Merry, S., Dorey, E., & Maddison, R. (2012). A development and evaluation process for mHealth interventions: Examples from New Zealand. Journal of Health Communication, 17(1), 11–21. doi: 10.1080/10810730.2011.649103
  • World Health Organisation. (2011). mHealth: New horizons for health through mobile technologies. Global Observatory for eHealth Series (Vol. 3). Geneva, Switzerland: Author.
  • Wright, K. B., Rains, S., & Banas, J. (2010). Weak-tie support network preference and perceived life stress among participants in health-related, computer-mediated support groups. Journal of Computer-Mediated Communication, 15, 606–624. doi: 10.1111/j.1083-6101.2009.01505.x
  • Wyatt, S., Henwood, F., & Hart, H. (2005). The digital divide, health information and everyday life. New Media & Society, 7(2), 199–218. doi: 10.1177/1461444805050747
  • Zarcadoolas, C., Blanco, M., Boyer, J., & Pleasant, A. (2002). Unweaving the web: An exploratory study of low-literate adults’ navigation skills on the World Wide Web. Journal of Health Communication, 7(4), 309–324. doi: 10.1080/10810730290088157
  • Zoller, H. M. (2005). Health activism: Communication theory and action for social change. Communication Theory, 15(4), 341–364. doi: 10.1111/j.1468-2885.2005.tb00339.x