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Lessons learned from founding a rare disease patient organization for hereditary angioedema in Japan: moving from a paternalistic to a power-sharing model of the physician-patient relationship
Abstract
Objective: To describe our personal experience of the potential of a rare disease patient organization for fostering patient autonomy and creating a space for the practice of power sharing between physicians and patients.
Methods: Using self-reflection and personal autobiographical experience while drawing on the conceptual framework of patient-centredness, we critically reflect on and formulate lessons from our experiences as a patient/researcher and physician/researcher active in a rare disease patient organization for hereditary angioedema established in Japan in 2013. Results: We identified multiple ways in which patient advocacy meetings shifted the patient-physician relationship to one of sharing power and responsibility. Appearing without his or her symbolic white coat, the physician is transformed into a person. In the context of shared group activities, the patient emerges as a person and one who is increasingly an informed and informing actor.
Conclusion: A dedicated rare disease patient organization has the potential to function as a catalyst for moving from a paternalistic to a power-sharing model of the patient-physician relationship. It can act as a transformative resource for all key actors.
Practice implications: The patient organization potentially reduces formal barriers and allows for the practice of effective patient-physician interactions, even in a cultural setting where paternalism generally shapes relationships. This can build social capital for both patient and physician.Keywords
References
Mead, N. & Bower, P. (2000). Patient-centredness: a conceptual framework and review of the empirical literature. Social Science & Medicine 51, 1087-1110.
Neuhauser, D. (2003). The coming third health care revolution: personal empowerment. Quality Management in Health Care 12, 171-184.
Taylor, K. (2009). Paternalism, participation and partnership - The evolution of patient centredness in the consultation. Patient Education and Counseling 74, 150-155.
Stewart, M., Brown, J.B., Weston, W.W., McWhinney, I.R., McWilliam, C.L. & Freeman, T.R. (1995). Patient-centered medicine: Transforming the clinical method. London: Sage Publications.
Stewart, M.A. (1995). Effective physician-patient communication and health outcomes: a review. Canadian Medical Association Journal 152, 1423-1433.
Little, P., Everitt, H., Williamson, I., Warner, G., Moore, M., Gould, C., Ferrier, K. & Payne, S. (2001). Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. British Medical Journal 323 (7318) 908-911.
Goodyear-Smith, F. & Buetow, S. (2001). Power issues in the doctor-patient relationship. Health Care Analysis 9, 449-462.
Morikawa, I. (1994). Patients’ rights in Japan: progress and resistance. Kennedy Institute of Ethics Journal 4, 337-343.
Ishiwata, R. & Sakai, A. (1994). The physician-patient relationship and medical ethics in Japan. Cambridge Quarterly of Healthcare Ethics 3, 60-66.
Takayama, T., Yamazaki, Y. & Katsumata, N. (2001). Relationship between outpatients’ perceptions of physicians’ communication styles and patients’ anxiety levels in Japanese oncology setting. Social Science & Medicine 53, 1335-1350.
Ishikawa, H. & Yamazaki, Y. (2005). How applicable are Western models of patient-physician relationship in Asia?: Changing patient-physician relationship in contemporary Japan. International Journal of Japanese Sociology 14, 84-93.
Ishikawa, H., Hashimoto, H., Roter, D.L., Yamazaki, Y., Takayama, T. & Yano, E. (2005). Patient contribution to the medical dialogue and perceived patient-centeredness. An observational study in Japanese geriatric consultations. Journal of General Internal Medicine 20, 906-910.
Yonemoto, S. (1997). AIDS policy in Japan: integration within structured paternalism. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology 14, S17-S21.
Ishikawa, H., Yano, E., Fujimori, S., Kinoshita, M., Yamanouchi, T., Yoshikawa, M., Yamazaki, Y. & Teramoto, T. (2009). Patient health literacy and patient-physician information exchange during a visit. Family Practice 26 (6) 517-523.
Schieppati, A., Henter, J-I., Daina, E. & Aperia, A. (2008). Why rare diseases are an important medical and social issue. Lancet 371, 2039-2041.
Aymé, S., Kole, A. & Groft, S. (2008). Empowerment of patients: lessons from the rare diseases community. Lancet 371, 2048-2051.
Richards, T., Snow, R. & Schroter, S. (2016). Co-creating health: more than a dream. British Medical Journal 354, i4550.
Mikami, K. & Sturdy, S. (2017). Patient organization involvement and the challenge of securing access to treatments for rare diseases: report of a policy engagement workshop. Research Involvement and Engagement 3, 14-26.
Craig, T., Aygören-Pürsün, E., Bork, K., Bowen, T., Boysen, H., Farkas, H. et al. (2012). WAO guideline for the management of hereditary angioedema. World Allergy Organization Journal 5 (12) 182-199.
Ohsawa, I., Honda, D., Nagamachi, S., Hisada, A., Shimamoto, M., Inoshita, H., Mano, S. & Tomino, Y. (2015). Clinical manifestations, diagnosis, and treatment of hereditary angioedema: survey data from 94 physicians in Japan. Annals of Allergy, Asthma & Immunology 114 (6) 492-498.
Zuraw, B.L., Banerji, A., Bernstein, J.A., Busse, P.J., Christiansen, S.C., Davis-Lorton, M., Frank, M.M., Li, H.H. Lumry, W.R., Riedi, M. & US Hereditary Angioedema Association Medical Advisory Board. (2013). US Hereditary Angioedema Association Medical Advisory Board 2013 recommendations for the management of hereditary angioedema due to C1 inhibitor deficiency. Journal of Allergy and Clinical Immunology. In Practice 1 (5) 458-467.
Bork, K., Hardt, J. & Witzke, G. (2012). Fatal laryngeal attacks and mortality in hereditary angioedema due to C1-INH deficiency. Journal of Allergy and Clinical Immunology 130, 692-697.
Shibuya, M., Takahashi, N., Yabe, M., Iwamoto, K. & Hide, M. (2014). Hereditary angioedema as the cause of death from asphyxia: postmortem computed tomography study. Allergology International 63, 493-494.
HAE Japan. http://haej.org/. Accessed 22 Jan 2018.
Nundy, S. & Oswald, J. (2014). Relationship-centered care: a new paradigm for population health management. Healthcare 2 (4) 216-219.
HAEDAY2017 in JAPAN English subtitle. https://www.youtube.com/watch?v=k8cXivcUVOo. Accessed 22 Jan 2018.
de Wit, M., Kirwan, J.R., Tugwell, P., Beaton, D., Boers, M., Brooks, P., et al. (2017). Successful stepwise development of patient research partnership: 14 years’ experience of actions and consequences in Outcome Measures in Rheumatology (OMERACT). The Patient 10 (2) 141-152.
National Organization for Rare Disorders (NORD). (2013). Leading patient organizations establish partnership to improve the lives of tens of millions of rare disease patients in Japan and the U.S. Available at: https://www.prnewswire.com/news-releases/leading-patient-organizations-establish-partnership-to-improve-the-lives-of-tens-of-millions-of-rare-disease-patients-in-japan-and-the-us-188826911.html. Accessed 22 Jan 2018.
Wong-Rieger, D., Claxton, W., Vines, R., Padilla, C., Tsang, K.P. & Hickinbotham, L. (2015). An Asia Pacific alliance for rare disease. The Patient 8, 11-17.
Chu, L.F., Utengen, A., Kadry, B., Kucharski, S.E., Campos, H., Crockett, J., Dawson, N. & Clauson, K.A. (2016). “Nothing about us without us” - patient partnership in medical conferences. British Medical Journal 354, i3883.
Rowland, P. & Kumagai, A.K. (2017). Dilemmas of representation: patient engagement in health professions education. Academic Medicine 93 (6) 869-873.
Amirav, I., Vandall-Walker, V., Rasiah, J. & Saunders, L. (2017). Patient and researcher engagement in health research: a parent’s perspective. Pediatrics 140, e20164127.
DOI: http://dx.doi.org/10.5750/ejpch.v6i4.1554
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