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Role of patients’ organizations in Health Technology Assessment: a Habermasian system and lifeworld perspective

Published online by Cambridge University Press:  15 December 2020

Neda Milevska-Kostova*
Affiliation:
Institute for Social Innovation, Nikola Parapunov 41, Skopje1000, Macedonia International Alliance of Patients’ Organisations, London, UK
Sita Ratna Devi Duddi
Affiliation:
International Alliance of Patients’ Organisations, London, UK Indian Alliance of Patient Groups, Gurgaon, India
Richard J. Cooper
Affiliation:
School of Health and Related Research, University of Sheffield, Sheffield, UK
*
Author for correspondence: Neda Milevska-Kostova, E-mail: [email protected]

Abstract

Patient and public involvement in Health Technology Assessment (HTA) is gaining increased interest among research and policy communities. Patients’ organizations represent an important link between individual patients and the health system. Social theories are increasingly being used to explain doctor–patient–system interactions, expanding understanding beyond the mere clinical perspective. In this sense, patient involvement in HTA can also be considered through the Habermas’s theory of communicative action. From a Habermasian perspective, HTA as part of the instrumental rationality contributes to an increased efficiency of resource use within the system; however, such rationalization threatens to colonize the lifeworld by making it “increasingly state administered with attenuated possibilities for communicative action as a result of the commercialization and rationalization in terms of immediate returns.” Using Habermasian system/lifeworld framework, this paper explores opportunities and obstacles to patient involvement in HTA, whereby trying to understand current and possible roles of patients’ organizations as a mediating force between HTA as a function of the system and the lifeworld represented by patients.

Type
Perspective
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Gagnon, M-P, Desmartis, M, Lepage-Savary, D, Gagnon, J, St-Pierre, M, Rhainds, M et al. Introducing patients’ and the public's perspectives to health technology assessment: A systematic review of international experiences. Int J Technol Assess Health Care. 2011;27:3142.CrossRefGoogle ScholarPubMed
Facey, KM, Hansen, HP, Single, AN. Patient involvement in health technology assessment. Singapore: Springer; 2017.CrossRefGoogle Scholar
Facey, KM. Health Technology Assessment. In: Facey KM, Hansen HP, Single AN, eds. Patient involvement in health technology assessment. Singapore: Springer; 2017. p. 316.CrossRefGoogle Scholar
Watt, A, Cameron, A, Sturm, L, Lathlean, T, Babidge, W, Blamey, S et al. Rapid reviews versus full systematic reviews: An inventory of current methods and practice in health technology assessment. Int J Technol Assess Health Care. 2008;24:133–9.CrossRefGoogle ScholarPubMed
Nielsen, CP, Funch, TM, Kristensen, FB. Health technology assessment: Research trends and future priorities in Europe. J Health Serv Res Policy. 2011;16:615.CrossRefGoogle ScholarPubMed
Hunter, A, Facey, K, Thomas, V, Haerry, D, Warner, K, Klingmann, I et al. EUPATI guidance for patient involvement in medicines research and development: Health technology assessment. Front Med. 2018;5:231.CrossRefGoogle ScholarPubMed
Weeks, L, Polisena, J, Scott, AM, Holtorf, A-P, Staniszewska, S, Facey, K. Evaluation of patient and public involvement initiatives in health technology assessment: A survey of international agencies. Int J Technol Assess Health Care. 2017;33:715–23.CrossRefGoogle ScholarPubMed
Milevska-Kostova, N. Policy change and regulation of primary care prescribing and dispensing in Macedonia – A qualitative study. Sheffield: University of Sheffield; 2017.Google Scholar
Habermas, J. The theory of communicative action. In: Habermas J, ed. Lifeworld and system: A critique of functionalist reason, vol. 2. Cambridge: Polity Press; 1987.Google Scholar
Mischler, E. The discourse of medical interviews. Norwood (NJ): Ablex; 1984.Google Scholar
Barry, CA, Stevenson, FA, Britten, N, Barber, N, Bradley, CP. Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor–patient communication in general practice.Soc Sci Med. 2001;53:487505.CrossRefGoogle ScholarPubMed
Scambler, G, Britten, N. System, lifeworld and doctor–patient interaction: Issues of trust in a changing world. In: Scambler, G, editor. Habermas, critical theory and health. London and New York: Routledge; 2001. p. 5375.Google Scholar
Britten, N. Medicines and society: Patients, professionals and the dominance of pharmaceuticals. New York: Palgrave Macmillan; 2008.CrossRefGoogle Scholar
Cuff, EC, Dennis, A, Francis, DW, Sharrock, WW. Perspectives in sociology. London and New York: Routledge; 2006.CrossRefGoogle Scholar
Finlayson, JG. Habermas: A very short introduction. Oxford: Oxford University Press; 2005.CrossRefGoogle Scholar
Small, N, Mannion, R. A hermeneutic science: Health economics and Habermas. J Health Organ Manage. 2005;19:219–35.CrossRefGoogle ScholarPubMed
Wong-Rieger, D. Moving from patient advocacy to partnership: A long and bumpy road. Patient. 2017;10:271–6.CrossRefGoogle ScholarPubMed
Stewart, M, Brown, JB, Weston, W, McWhinney, IR, McWilliam, CL, Freeman, T. Patient-centered medicine: Transforming the clinical method. Boca Raton: CRC Press; 2013.CrossRefGoogle Scholar
Tylor, EB. Primitive culture: Researches into the development of mythology, philosophy, religion, art, and custom. London: John Murray; 1871.Google Scholar
Mead, GH. Mind, self, and society: From the standpoint of a social behaviorist. Chicago: C. Morris, The University of Chicago Press; 1972.Google Scholar
Durkheim, E, Halls, W. The division of labour in society [De la division du travail social]. Basingstoke: Macmillan; 1984.Google Scholar
Habermas, J, Press, P. The public sphere: An inquiry into a category of Bourgeois society. Cambridge: Polity Press; 1989.Google Scholar
Williams, G, Popay, J. Lay health knowledge and the concept of the lifeworld. In: Scambler, G, editor. Habermas, critical theory and health. London and New York: Routledge; 2001. p. 3352.Google Scholar
Staniszewska, S, Werkö, S. Patient-based evidence in HTA. In: Facey KM, Hansen HP, Single AN, eds. Patient involvement in health technology assessment. Singapore: Springer; 2017. p. 4350.CrossRefGoogle Scholar
Wong-Rieger, D. Discussion: Patient participation in HTA—Evidence of real change?. In: Facey KM, Hansen HP, Single AN, eds. Patient involvement in health technology assessment. Singapore: Springer; 2017. p. 373–80.CrossRefGoogle Scholar
Herxheimer, A. Relationships between the pharmaceutical industry and patients’ organisations. BMJ. 2003;326:1208–10.CrossRefGoogle ScholarPubMed
Kent, A. Should patient groups accept money from drug companies? Yes. BMJ. 2007;334:934.CrossRefGoogle ScholarPubMed
Mintzes, B. Should patient groups accept money from drug companies? BMJ. 2007;334:935.CrossRefGoogle ScholarPubMed
Rose, SL, Highland, J, Karafa, MT, Joffe, S. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med. 2017;177:344–50.CrossRefGoogle ScholarPubMed
Baxter, H. System and life-world in Habermas's “Theory of Communicative Action”. Theory Soc. 1987;16:3986.CrossRefGoogle Scholar
Gibson, A, Britten, N, Lynch, J. Theoretical directions for an emancipatory concept of patient and public involvement. Health. 2012;16:531–47.CrossRefGoogle ScholarPubMed