Communication for "patient liberation". The role of new media in the case of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS)

Journal title SALUTE E SOCIETÀ
Author/s Ivana Matteucci
Publishing Year 2021 Issue 2021/1 Language Italian
Pages 15 P. 165-179 File size 420 KB
DOI 10.3280/SES2021-001012
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The article examines the opportunities for change in new media narratives. In this case new media become tools calling for "patient liberation". A case-based qualitative study was devel-oped and a phenomenological-interpretative-anthropological narrative-based medical approach was applied to examine written narrations produced online by patients, to gain insights into their experiences of illness and underlying socio-cultural factors. We found that online narra-tive played a significant role leading to greater awareness and individual empowerment of pa-tients, and fostering mutual support and the development of community actions at the collec-tive level.

Keywords: Narrative-based medicine; communication; new media; health; multiple sclerosis; doctor-patient relationship.

  1. Greenhalgh T., Hurwitz B. (1998). Narrative Based Medicine. Dialogue and Discourse in Clinical Practice. London: BMJ Books.
  2. Abbott A. (1992). “What do cases do?” Some notes on activity in sociological analysis. In: Ragin C.C., Becker H.S., editors, What is a case? Exploring the foundations of social inquiry. Cambridge: Cambridge University Press.
  3. Baker L., Wagner T.H., Singer S., Bundorf M.K. (2003). Use of the Internet and e-mail for health care information: Results from a national survey. The Journal of the American Medical Association, 289(18): 2400-6.
  4. Baker M. (2000). Patient care (empowerment): The view from a national society. The British Medical Journal, 320(7250): 1660-1662.
  5. Barak A., Boniel-Nissim M., Suler J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24(5): 1867-1883.
  6. Charon R. (2006). Narrative medicine. Honoring the stories of illness. New York: Oxford University Press.
  7. Charon R. (2007). What to do with stories: the sciences of narrative medicine. Canadian Family Physician, 53(8): 1265-1267.
  8. Charon R., DasGupta S., Hermann N., Irvine C., Marcus E.R., Ivera Colón E., Spencer D., Spiegel M. (2017). The Principles and Practice of Narrative Medicine. Oxford: Oxford University Press.
  9. Cipolla C., Maturo A. (2008). Il modello Esa: una lettura socio-psico-biologica della malattia. Salute e società, 7(3): 219-225.
  10. Fox N.J., Ward K.J., O’Rourke A.J (2005). The “expert patient”: empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet. Social Sciences and Medicine, 60(6): 1299-309.
  11. Frank A.W. (1995). The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press.
  12. Frank A.W. (2000). The standpoint of storyteller. Qualitative Health Research, 10: 354-365. DOI: 10.1177/10497320012911849
  13. Giarelli G. (2010). Narrare la pratica medica: una prospettiva fenomenologica-ermeneutica. Salute e società, 9(2): 50-66. DOI: 10.3280/SES2010-00200
  14. Giarelli G., Good B.J., Del Vecchio Good M.J., Martini M., Ruozi C. (2005). Storie di cura. Medicina narrativa e medicina delle evidenze: l’integrazione possibile. Milano: Franco Angeli.
  15. Good B.J. (1994). Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press. (trad. it. Narrare la malattia. Lo sguardo antropologico sul rapporto medico-paziente. Milano: Comunità, 1999).
  16. Hofman B. (2002). On the triad disease, illness, sickness. Journal of Medicine and Philosophy, 6: 651-673.
  17. Illich I. (1976). Medical Nemesis. The Expropriation of Health. New York: Pantheon Books (trad. it.: Nemesi medica. L’espropriazione della salute. Milano: Mondadori, 2004).
  18. ISS (Istituto superiore di sanità)-CNMR (Centro Nazionale Malattie Rare) (2015). Conferenza di consenso. Linee di indirizzo per l’utilizzo della medicina narrativa in ambito clinico-assistenziale, per le malattie rare e cronico-degenerative. Il Sole24Ore Sanità. I Quaderni di Medicina, n. 7. -- Availbale at: (21/09/2020).
  19. Jones A.H. (1999). Narrative based medicine: narrative in medical ethics. British Medical Journal, 318: 253-256.
  20. Kaplan-Myrth N. (2007). Interpreting people as they interpret themselves. Narrative in medical anthropology and family medicine. Canadian Family Physician, 53(8): 1268-1269.
  21. Kirkpatrick H. (2008). A narrative framework for understanding experiences of people with severe mental illnesses. Archives of Psychiatric Nursing, 22(2): 61-8.
  22. Kleinman A. (1978). Concepts and a model for the comparison of medical systems as cultural systems. Social Science and Medicine, 12(2-B): 85-93. DOI: 10.1016/S0277-9536(78)80014-
  23. Kleinman A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
  24. Lavie-Ajayi M., Almog N., Krumer-Nevo M. (2012). Chronic pain as a narratological distress: A Phenomenological Study. Chronic Illness, 88(3): 192-200. DOI: 10.1177/174239531244966
  25. Leder D. (1990). Clinical interpretation: The hermeneutics of medicine. Theoretical Medicine, 11(1): 9-24. DOI: 10.1007/BF0048923
  26. Lovari A. (2017). Social media e comunicazione della salute. Profili istituzionali e pratiche digitali. Milano: Guerini & Associati.
  27. Madden M., Fox S. (2006). Finding answers online in sickness and in health. Pew Internet American Life Project 2006. -- Available at: (16/11/2020).
  28. Masini V. (2010). Psichiatria narrativa e counseling relazionale. Salute e società, 9(2): 83-106. DOI: 10.3280/SES2010-00200
  29. Mattingly C. (1994). The concept of therapeutic ‘emplotment’. Social Science e Medicine, 38(6): 811-822. DOI: 10.1016/0277-9536(94)90153-
  30. Maturo A. (2007). Sociologia della malattia. Un’introduzione. Milano: FrancoAngeli.
  31. McMullan M. (2006). Patients using the Internet to obtain health information: How this affects the patient-health professional relationship. Patient Education and Counseling, 63(1-2): 24-28.
  32. Mishler E.G. (1996). Missing persons: recovering developmental stories/histories. In: Jessor R., Colby A., Shweder R.A., editors, Ethnography and human development: Context and meaning in social inquiry. Chicago: University of Chicago Press.
  33. Orizio G., Schulz P.J., Gasparotti C., Caimi L., Gelatti U. (2010). The world of e-patients: a content analysis of online social networks focusing on deseases. Telemedicine and e-Health, 16(10): 1060-6. DOI: 10.1145/2675133.267525
  34. Riessman C. (2008). Narrative Methods for the Human Sciences. London: SAGE.
  35. Rubinelli S., Schulz P.J. (2009). Health literacy beyond knowledge and behavior: Letting the patient be a patient. International Journal of Public Health, 54(5): 307-311.
  36. Salvi F., Bartolomei I., Buccellato E., Galeotti R., Zamboni P. (2012). Venous angioplasty in multiple sclerosis: neurological outcome at two years in a cohort of relapsing-remitting patients. Functional Neurology, 27(1): 55-59.
  37. Schulz P.J., Rubinelli S. (2010). Internet-enhanced health communication. Social Semiotics, 20(1): 3-7. DOI: 10.1080/1035033090343835
  38. Scott S.D., Hartling L, Klassen T.P. (2009). The power of stories: using narratives to communicate evidence to consumers. Nurs Womens Health, 13(2): 109-11.
  39. Smith B., Sparkes A.C. (2011). Exploring multiple responses to a chaos narrative. Health, 15(1): 38-53. DOI: 10.1177/136345930936078
  40. Thomas C. (2010). Negotiating the contested terrain of narrative methods in illness contexts. Sociology of Health & Illness, 32(4): 647-60.
  41. Twaddle A., Nordenfelt L. (1994). Disease, illness and sickness: three central concepts in the theory of health. Linköping, Sweden: Linköping University.
  42. Woodward-Kron R., Connor M., Schulz P.J., Elliott, K. (2014). Educating the patient for healthcare communication in the age of the world wide web: A qualitative study. Academic Medicine, 89(2): 318-325. DOI: 10.1097/ACM.000000000000010
  43. Zamboni P. (2006). The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in Multiple sclerosis. Journal of the Royal Society of Medicine, 99(11): 589-593. DOI: 10.1177/01410768060990112
  44. Zamboni P., Galeotti R., Weinstock-Guttman B., Kennedy C., Salvi F., Zivadinov R. (2012). Venous angioplasty in patients with multiple sclerosis: results of a pilot study. European Journal of Vascular and Endovascular Surgey, 43(1): 116-122.
  45. Zannini L. (2001). Salute, malattia e cura. Teorie e percorsi di clinica della formazione per gli operatori socio-sanitari. Milano: FrancoAngeli.

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Ivana Matteucci, Communication for "patient liberation". The role of new media in the case of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS) in "SALUTE E SOCIETÀ" 1/2021, pp 165-179, DOI: 10.3280/SES2021-001012