E-health and the performativity of the "health democracy"


  • Hervé Dumez i3, Centre de Recherche en Gestion, Ecole Polytechnique
  • Etienne Minvielle Management des Organisations en santé (MOS), Ecole des Hautes Etudes en Santé Publique (EHESP)




Key-words, performativité, e-santé, démocratie sanitaire, engagement du patient, empowerment


Since at least the 1990s, a movement quoted as the “health democracy,” has set out to establish new rights for patients, and changes current professional practices. Its dynamic can be analyzed through the lens of performativity, a whole wave of research with the aim to understand how a theory or doctrine can feasibly make real what it theorizes and encourages. “Health democracy” intends to reduce the disproportionate distribution of power in doctor/patient relationships. In parallel, different innovations related to the ir- ruption of E-health (social networks, web applications, and other devices) are currently modifying the practices, and thereby reconstructing the relationships between patients and professionals. Based on a corpus analysis, using a scoping review method, this article ex- plores the ways E-health modifies the process of performativity in the “health democracy”. Two effects are identified: a co-production introduced in the classic relationship between patients and healthcare professionals thanks to a better follow-up at distance, and a new form of expertise based on the information circulating on the internet. Each effect develops its own benefits and risks. In order to optimize this new added-value offered by E-health on patient engagement, many managerial consequences must be taken into account. Em- ploying a narrative approach to the dynamics currently at play, it establishes that E-health represents a process of performativity of health democracy by “overflowing”. It also high- lights a risk of counter-performativity: in that if the traditional patient/doctor relationship is less asymmetric, answering to the “health democracy”’s demand may pose another risk related to the use of internet-based information that threats this equilibrium.


Abbott, A. (2001). Time Matters: On Theory and Method. University of Chicago Press, Chicago.

Abell, P. (2004). Narrative Explanation: An Alternative to Variable-Centered Explanation? Annual Review of Sociology, vol. 30, p. 287–310.

Abrahamson, E. Berkowitz, H., & Dumez, H. (2016) “A More Relevant Approach to Relevance in Management Studies: An Essay on Performativity”, The Academy of Management Review, vol. 41, n° 2 (April), pp. 367-381.

Agamben, G. (2007). Qu’est-ce qu’un dispositif ? Rivages, Marseille.

Akrich, M., & Méadel, C. (2002). Prendre ses médicaments/prendre la parole : les usages des médicaments par les patients dans les listes de discussion électroniques. Sciences Sociales et Santé, vol. 20, n°1, p. 89–116.

Akrich, M., & Méadel, C. (2009). Les échanges entre patients sur l’Internet. La Presse Médicale, vol. 38, n°10, p. 1484–1490. http://doi.org/10.1016/j.lpm.2009.05.013

Amar, L., & Minvielle, É. (2000). L’action publique en faveur de l’usager : de la dynamique institutionnelle aux pratiques quotidiennes de travail. Sociologie Du Travail, vol. 42, n°1, p. 69–89. http://doi.org/10.1016/S0038-0296(00)00105-9

Aujoulat, I., d’Hoore, W., & Deccache, A. (2007). Patient empowerment in theory and practice: Polysemy or cacophony? Patient Education and Counseling, vol. 66, n°1, p 13–20. http://doi.org/10.1016/j.pec.2006.09.008

Austin, J. L. (1961). Philosophical Papers. Oxford University Press, Oxford.

Bacqué, M.-H., & Biewener, C. (2013). L’empowerment, une pratique émancipatrice. La Découverte, Paris.

Bardes, CL. (2012), « Defining patient-centered medicine », New England Journal of Medicine, vol. 366, n°9, p. 782–3.

Barello, S., Graffigna, G., Vegni, E., Savarese, M., Lombardi, F., & Bosio, A. C. (2015). “Engage me in taking care of my heart”: a grounded theory study on patient–cardiologist relationship in the hospital management of heart failure. BMJ Open, vol. 5, n°3, e005582. http://doi.org/10.1136/bmjopen-2014-005582

Barello, S., Triberti, S., Graffigna, G., Libreri, C., Serino, S., Hibbard, J., & Riva, G. (2016). eHealth for Patient Engagement: A Systematic Review. Frontiers in Psychology, vol. 6. http://doi.org/10.3389/fpsyg.2015.02013

Berkowitz, H, & Dumez, H. (2014). Performativity processes of strategic management theories: Framing, overflowing and hybridization. Paris, Cass Business School/École des Mines.

Beratarrechea A., Lee A.G., Willner J.M., Jahangir E., Ciapponi A., Rubinstein A. (2013). The Impact of Mobile Health Interventions on Chronic Disease Outcomes in Developing Countries: A Systematic Review. Telemedicine and e-Health. vol. 20, n°1, p. 75-82. doi:10.1089/tmj.2012.0328.

Besson P., Rowe F. (2011). Perspectives sur le phénomène de la transformation organisationnelle, Système d’Information et Management, vol. 16, n°1, p. 3–34.

Callon, M. (1998). The Laws of the Markets, Blackwell, Oxford.

Callon, M. (2007). What does it mean to say that economics is performative. In MacKenzie, D. A., Muniesa, F., & Siu, L. (2007). Do Economists Make Markets?: On the Performativity of Economics. Princeton University Press, Princeton, p. 311–357.

Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies. Health Affairs, vol. 32, n°2, p. 223–231. http://doi.org/10.1377/hlthaff.2012.1133

Carpini, M. X. D., Cook, F. L., & Jacobs, L. R. (2004). Public deliberation, discursive participation, and citizen engagement: A Review of the Empirical Literature. Annual Review of Political Science, vol. 7, n°1, p. 315–344. http://doi.org/10.1146/annurev.polisci.7.121003.091630

Charmel, P., & Frampton, S. (2008). Building the business case for patient-centered care. Healthcare Financial Management, vol. 62, n°3, p. 80–85.

Coiera, E. (2013). Social networks, social media, and social diseases. BMJ, 346. Retrieved from http://www.bmj.com/content/346/bmj.f3007.short

Coulter, A., & Ellins, J. (2007). Effectiveness of strategies for informing, educating, and involving patients. BMJ, vol. 335, n°7609, p. 24–27. http://doi.org/10.1136/bmj.39246.581169.80

Couralet, M., Leleu, H., Capuano, F., Marcotte, L., Nitenberg, G., Sicotte, C., & Minvielle, E. (2013). Method for developing national quality indicators based on manual data extraction from medical records. BMJ Quality & Safety, vol. 22, n°2, p. 155–162. http://doi.org/10.1136/bmjqs-2012-001170

Crié D, Salerno D, Vincent A. (2014). Vers un marketing hospitalier. Journal de gestion et d'économie médicales, vol. 32, n°3, p. 189-208.

Cutler, D. (2013). Why Medecine will be more like walmart. MIT Technology Review. doi:http://www.technologyreview.com/news/518906/why-medicine-will-be-more-likewalmart/

Dumez, H. (2016, 2e ed). Méthodologie de la recherche qualitative: les questions clés de la démarche compréhensive. Vuibert, Paris.

Dedding C, Van Doorn R, Winkler L, Reis R. (2011). How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients. Social Science & Medicine, vol. 72, n°1, p. 49-53.

Demiris G. (2006). The diffusion of virtual communities in health care: Concepts and challenges. Patient Education and Counseling, vol. 62, n°2, p. 178-88.

Eysenbach, G. (2001). What is e-health? Journal of Medical Internet Research, vol. 3, n°2, e20. http://doi.org/10.2196/jmir.3.2.e20

Ferguson, T., & Frydman, G. (2004). The first generation of e-patients, the new medical colleagues could provide sustainable healthcare solutions. British Medical Journal, vol. 15, p. 1148–1149.

Frosch, D. L., & Elwyn, G. (2011). I Believe, Therefore I Do. Journal of General Internal Medicine, vol. 26, n°1, p. 2–4. http://doi.org/10.1007/s11606-010-1560-1

Fudge, N., Wolfe, C. D. A., & McKevitt, C. (2008). Assessing the promise of user involvement in health service development: ethnographic study. BMJ, vol. 336, n°7639, p. 313–317. http://doi.org/10.1136/bmj.39456.552257.BE

Gaventa, J., & Barrett, G. (2010). So what difference does it make. Mapping the Outcomes of Citizen. IDS Working Paper 347, Brighton: IDS

Graffigna, G., Barello, S., & Riva, G. (2013). Technologies for patient engagement. Health Affairs, vol. 32, n°6, p. 1172–1172.

Graffigna, G., Barello, S., & Triberti, S. (2016). Patient Engagement: A Consumer-Centered Model to Innovate Healthcare. Walter de Gruyter GmbH & Co KG, Berlin.

Griffiths F, Cave J, Boardman F, Ren J, Pawlikowska T, Ball R, et al. (2012). Social networks–The future for health care delivery. Social science & medicine, vol. 75, n°12, p. 2233-41.

Gruman, J., Rovner, M. H., French, M. E., Jeffress, D., Sofaer, S., Shaller, D., & Prager, D. J. (2010). From patient education to patient engagement: Implications for the field of patient education. Patient Education and Counseling, vol. 78, n°3, p 350–356. http://doi.org/10.1016/j.pec.2010.02.002

Guadagnoli, E., & Ward, P. (1998). Patient participation in decision-making. Social Science & Medicine, vol. 47, n°3, p. 329–339. http://doi.org/10.1016/S0277-9536(98)00059-8

Guendalina, G., Serena, B., Stefano, T., K, W. B., Claudio, B. A., & Giuseppe, R. (2014). Enabling eHealth as a Pathway for Patient Engagement: a Toolkit for Medical Practice. Studies in Health Technology and Informatics, vol. 199, p. 13–21. http://doi.org/10.3233/978-1-61499-401-5-13

Gerteis, M., et al. (1993), Through the patient’s eyes, Jossey-Bass, San Francisco.

Hamine, S., Gerth-Guyette, E., Faulx, D., Green, BB., & AS. Ginsburg (2015). “Impact of mHealth Chronic Disease Management on Treatment Adherence and Patient Outcomes: A Systematic Review”, Journal of Medical Internet Research, p. 17-2, e52. doi: 10.2196/jmir.3951

Hardyman, W., Daunt, K. L., & Kitchener, M. (2015). Value Co-Creation through Patient Engagement in Health Care: A micro-level approach and research agenda. Public Management Review, vol. 17, n°1, p. 90–107. http://doi.org/10.1080/14719037.2014.881539

Hibbard, J. H., Mahoney, E. R., Stock, R., & Tusler, M. (2007). Do Increases in Patient Activation Result in Improved Self-Management Behaviors? Health Services Research, vol. 42, n°4, p. 1443–1463. http://doi.org/10.1111/j.1475-6773.2006.00669.x

Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Services Research, vol. 39, n°4 pt 1, p. 1005–1026. http://doi.org/10.1111/j.1475-6773.2004.00269.x

Huckvale K, Prieto JT., Tileny M., Benghozi PJ. Car J. (2015). Unaddressed privacy risks in accredited health and wellness apps: a cross-sectional systematic assessment. BMC Medicine, vol. 13, n°214.

http://doi: 10.1186/s12916-015-0444-y

Karazivan, P., Dumez, V., Flora, L., Pomey, M.-P., Del Grande, C., Ghadiri, D. P., Lebel, P. (2015). The Patient-as-Partner Approach in Health Care: A Conceptual Framework for a Necessary Transition. Academic Medicine, vol. 90, n°4, p.437–441. http://doi.org/10.1097/ACM.0000000000000603

Knoppers BM. (2014). It’s Yet to Be Shown That Genetic Discrimination Exists », The New York Times,


Kuijpers W, Groen WG, Aaronson NK, van Harten WH. (2013). A Systematic Review of Web-Based Interventions for Patient Empowerment and Physical Activity in Chronic Diseases: Relevance for Cancer Survivors. J Med Internet Res. vol. 15, n°2, e37.

Laroche P, Soulez S. (2012). La méthodologie de la méta-analyse en marketing. Recherche et Applications en Marketing (French Edition), SAGE Publications, vol. 27, n°1, p. 79-105.

Mackenzie, D. (2006). An Engine, Not a Camera: How Financial Models Shape Markets. MIT Press, Cambridge.

MacKenzie, D. A., Muniesa, F., & Siu, L. (2007). Do Economists Make Markets?: On the Performativity of Economics. Princeton University Press, Princeton.

Marrauld L., Dumez H., Minvielle E. (2015). État des lieux de la santé numérique. Rapport remis à la Fondation de l’avenir, Mutualité française, Paris.

Miles, M.B., & Huberman, M. (1994). Qualitative data analysis: An expanded sourcebook, Sage, Thousand Oaks.

Minvielle, E., Waelli M., Sicotte C., Kimberly J. (2014). A framework for care customization derived from the service sectors literature, Health Policy,vol. 117, n°2, p. 216-227.

Mockford, C., Staniszewska, S., Griffiths, F., & Herron-Marx, S. (2012). The impact of patient and public involvement on UK NHS health care: a systematic review. International Journal for Quality in Health Care, vol. 24, n°1, p. 28–38. http://doi.org/10.1093/intqhc/mzr066

Morozov, E. (2014). Pour tout résoudre, cliquez ici : l’aberration du solutionnisme technologique. Limoges, Fyp éd.

Muniesa, F. (2014). The Provoked Economy: Economic Reality and the Performative Turn. Routledge, Oxford.

Organisation Mondiale de la Santé. (2016). From innovation to implementation. E-Health in the WHO European Region. Copenhagen: World Health Organisation.

Pagliari, C., Sloan, D., Gregor, P., Sullivan, F., Detmer, D., Kahan, J. P., MacGillivray, S. (2005). What Is eHealth (4): A Scoping Exercise to Map the Field. Journal of Medical Internet Research, Vol 7, n°1, e9. http://doi.org/10.2196/jmir.7.1.e9

Paré, G., Jaana, M., & Sicotte, C. (2007). Systematic Review of Home Telemonitoring for Chronic Diseases: The Evidence Base. Journal of the American Medical Informatics Association, vol. 14, n°3, p. 269–277. http://doi.org/10.1197/jamia.M2270

Paré, G., Trudel, MC., Jaana, M., Kitsiou., S. (2015). Synthesizing information systems knowledge: A typology of literature reviews. Information & Management vol. 52, p. 183–199

Paré, G., Tate, M., Johnstone, D., Kitsiou, S. (2016). Contextualizing the twin concepts of systematicity and transparency in information systems literature reviews. European Journal of Information System. doi:10.1057/s41303-016-0020-3

Parsons, T. (1951). Illness and the Role of the Physician: A Sociological Perspective. American Journal of Orthopsychiatry, vol. 21, n°3, p. 452–460. http://doi.org/10.1111/j.1939-0025.1951.tb00003.x

Pomey, M.-P., Ghadiri, D. P., Karazivan, P., Fernandez, N., & Clavel, N. (2015). Patients as Partners: A Qualitative Study of Patients’ Engagement in Their Health Care. Plos One, vol. 10, n°4, e0122499. http://doi.org/10.1371/journal.pone.0122499

Putnam, H. (2004). Fait/Valeur : la fin d’un dogme et autres essais. Éditions de l’éclat, Paris.

Platonova EA, Kennedy KN, Shewchuk RM. (2008) Understanding patient satisfaction, trust, and loyalty to primary care physicians. Medical Care Research and Review, vol. 65, n°6, p. 696-712.

Rabeharisoa, V., & Callon, M. (1999). Le pouvoir des malades: l’Association française contre les myopathies et la recherche. Presses des Mines, Paris.

Ricciardi, L., Mostashari, F., Murphy, J., Daniel, J. G., & Siminerio, E. P. (2013). A National Action Plan To Support Consumer Engagement Via E-Health. Health Affairs, vol. 32, n°2, p. 376–384. http://doi.org/10.1377/hlthaff.2012.1216

Richards, T., Montori, V. M., Godlee, F., Lapsley, P., & Paul, D. (2013). Let the patient revolution begin. BMJ, vol. 346, f2614. http://doi.org/10.1136/bmj.f2614

Schwerin, E. W. (1995). Mediation, citizen empowerment, and transformational politics. Praeger Publishers, Westport.

Sillence E, Briggs P, Harris PR, Fishwick L. (2007). How do patients evaluate and make use of online health information? Social Science & Medicine, vol. 64, n°9, p. 1853-62.

Steventon A, Bardsley M, Billings J, Dixon J, Doll H, Hirani S, Cartwright M, Rixon L, Knapp M, Henderson C, Rogers A, Fitzpatrick R, Hendy J, Newman S; Whole System Demonstrator Evaluation Team. (2012) Effect of telehealth on use of secondary care and mortality: findings from the Whole System Demonstrator cluster randomised trial. BMJ, vol. 21, n°344, e3874

Stock, S., Miranda, C., Evans, S., Plessis, S., Ridley, J., Yeh, S., & Chanoine, J.-P. (2007). Healthy Buddies: A Novel, Peer-Led Health Promotion Program for the Prevention of Obesity and Eating Disorders in Children in Elementary School. Pediatrics, vol. 120, n°4, e1059–e1068. http://doi.org/10.1542/peds.2006-3003

Tabuteau, D. (2015). La place de l’usager. Vers une vraie démocratie sanitaire ? Les Actes des Universités d’été de l’ANAP, Tours.

Taylor, R., Bower, A., Girosi, F., Bigelow, J., Fonkych, K., & Hillestad, R. (2005). Promoting health information technology: is there a case for more-aggressive government action? Health Affairs, Vol 24, n°5, p 1234-1245.

Topol, E. (2015). The Patient Will See You Now: The Future of Medicine is in Your Hands. Basic Books, New York.

Vermeire, E., Hearnshaw, H., Van Royen, P., & Denekens, J. (2001). Patient adherence to treatment: three decades of research. A comprehensive review. Journal of Clinical Pharmacy and Therapeutics, vol. 26, n°5, p. 331–342. http://doi.org/10.1046/j.1365-2710.2001.00363.x





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