The Democratization of Science in Healthcare
The Phenomenon of Patient Engagement
Keywords:
patient engagement, democratization of science, science culture, extended peer community, formative participationAbstract
This article analyzes the potential of patient engagement as a form of democratization of science in healthcare. Firstly, it delves into the notion of patient engagement, examining its origins, its different current definitions, both formal and operational, and the various actors involved. Secondly, it evaluates the concepts and dimensions of science culture under which patient engagement can be situated, paying special attention to its relationship with the idea of the extended community of peers in the context of post-normal science and with the praxeological dimension of science culture. Finally, after describing the notion’s revolution against medical paternalism and its great affinity with the phenomenon of citizen participation in science and technology, it discusses the possibility of interpreting patient engagement as a form of democratization of science called “formative participation”.
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References
Bandura, A. (1986). Social Foundations of Thought and Action: A Social Cognitive Theory. Nueva Jersey: Prentice Hall.
Bauer, M. W., Allum, N. & Miller, S. (2007). What can we learn from 25 years of PUS survey research? Liberating and expanding the agenda. Public Understanding of Science, 16(1), 79-95.
Bernstein, D. (2021). The evolution of patient engagement [. Hanover: SCRS Sites NOW. Recuperado de: 2021.01-Patient-Engagement.pdf (myscrs.org).
Betsch, C., Schmid, P., Heinemeier, D., Korn, L., Holtmann, C. & Böhm, R. (2018). Beyond confidence: Development of a measure assessing the 5C psychological antecedents of vaccination. PloS one, 13(12), e0208601.
Bidwell, D. (2009). Is community-based participatory research postnormal science? Science, Technology & Human Values, 34(6), 741-761.
Bourbeau, J. (2020). Defining patient engagement, health behavior change, and disease self-management. En M. L. Moy, F. Blackstock & L. Nici (Eds.), Enhancing Patient Engagement in Pulmonary Healthcare: The Art and Science (1-14). Springer Nature.
Bourdieu, P. (1997). Razones prácticas: sobre la teoría de la acción. Barcelona: Editorial Anagrama.
Bucchi, M. & Neresini, F. (2008). Science and public participation. En New Handbook of Science and Technology Studies (449-473). Massachusetts: MIT Press.
Callon, M. & Rabeharisoa, V. (2003). Research “in the wild” and the shaping of new social identities. Technology in society, 25(2), 193-204.
de Cózar Escalante, J. M. & Gómez Ferri, J. (2021). Community based scientific culture: wave or particle? En M. Eynde & C. Polino (Coords.), Pocket Science. The Praxeological Dimension of Scientific Culture (43-58). Madrid: CIEMAT.
Davies, C., Wetherell, M. & M. Barnett, E. (2006). Citizens at the Centre: Deliberative Participation in Healthcare Decisions. Bristol: The Policy Press.
Doherty, M., Jenkins, W., Richardson, H., Sarmanova, A., Abhishek, A., Ashton, D. & Zhang, W. (2018). Efficacy and cost-effectiveness of nurse-led care involving education and engagement of patients and a treat-to-target urate-lowering strategy versus usual care for gout: a randomized controlled trial. The Lancet, 392(10156), 1403-1412.
Epstein, S. (1996). Impure Science: Aids, Activism and the Politics of Knowledge. Londres: University of California Press.
Foucault, M. (1963). The Birth of the Clinic: An Archaeology of Medical. Nueva York: Vintage Books.
Funtowicz, S. & Hidalgo, C. (2024). Epistemología política: ciencia con la gente. Revista Iberoamericana de Ciencia, Tecnología y Sociedad, 19(55). DOI: https://doi.org/10.52712/issn.1850-0013-454.
Funtowicz, S. & Ravetz, J. (1993). Science for the post-normal age. Futures, 25(7), 739- 755.
Hahn, H., Neurath, O. & Carnap, R. (2002). La concepción científica del mundo: el Círculo de Viena. Redes, 18, 103-149.
Jasanoff, S. (1999). From participation to intervention. Presidential address. Society for the Social Studies of Science annual meeting. Nueva Escocia: Halifax.
Jerofke‐Owen, T. A., Tobiano, G. & Eldh, A. C. (2023). Patient engagement, involvement, or participation—entrapping concepts in nurse‐patient interactions: A critical discussion. Nursing Inquiry, 30(1), e12513.
Kuhn, T. S. (1994). La estructura de las revoluciones científicas. México: Fondo de Cultura Económica.
Levine, A. (1982). Love Canal: Science, Politics, and People. Massachusetts/Toronto: Lexington Books.
López Cerezo, J. A. (2005). Participación ciudadana y cultura científica. Arbor: Ciencia, pensamiento y cultura, 351-362.
López Cerezo, J. A. (2014). North by northwest: the search for objectivity in the origins of modern western medicine. En F. Lan & F. Wallner (Eds.), Concepts of Health from the Viewpoint of Four Cultures (133-152). Nordhausen: Traugott Bautz GmbH.
López Cerezo, J. A. (2017). Cultura científica: paradigmas, tendencias y crítica social. En M. Hernán, M. Camejo & L. Giri (Coords.), Ciencia, tecnología y educación: miradas desde la filosofía de la ciencia (9-22). Montevideo: Editorial Byblos.
López Cerezo, J. A. (2018). La confianza en la sociedad del riesgo. Barcelona: Sello Editorial.
López Cerezo, J. A. & González García, M. I. (2002). Políticas del bosque: expertos, políticos y ciudadanos en la polémica del eucalipto en Asturias. Madrid: Cambridge University Press.
NIHR (2021). Briefing notes for researchers - public involvement in NHS, health and social care research. National Institute for Health and Care Research. Recuperado de: Briefing notes for researchers - public involvement in NHS, health and social care research | NIHR.
PERC (s/f). Patients should be involved in your research: patient engagement resource centre. European Infrastructure for Translational Medicine. Recuperado de: Patient Engagement Resource Centre – Involve Patients in all stages of your research (patient- engagement.eu).
Reiss, S. J. (2017). Fact-value entanglement in positive economics. Journal of Economic Methodology, 24(2), 134-149.
Reiss, S. J. (2021). Measurement and value judgements. En C. Heilmann & J. Reiss (Eds.), The Routledge Handbook of Philosophy of Economics (223-233). Nueva York: Routledge.
Reiser, S. J. (2009). Technological Medicine: The Changing World of Doctors and Patients. Nueva York: Cambridge University Press.
Renn, O., Webler, T. & Wiedemann, P. (1995). Fairness and Competence in Citizen Participation. Dordrecht: Springer Science+Business Media.
Reunión Regional de Consulta de América Latina y el Caribe de la Conferencia Mundial sobre la Ciencia (1999). Declaración de Santo Domingo. La ciencia para el siglo XXI: una nueva visión y un marco de acción. Revista Iberoamericana de Educación, (20), 239-249.
Rowe, G. & Frewer, L. J. (2000). Public participation methods: a framework for evaluation. Science, Technology, & Human Values, 25(1), 3-29.
Sardar, Z. (2010). Welcome to postnormal times. Futures, 42(5), 435-444.
University of Minnesota (2024). Rural Health Promotion and Disease Prevention Toolkit. Rural Health Information Hub. Recuperado de: Social Cognitive Theory Model - Rural Health Promotion and Disease Prevention Toolkit (ruralhealthinfo.org).
University of Oxford Medical Sciences Division. (s/f). Patient and public involvement, engagement and participation definitions. University of Oxford. Recuperado de: Patient and public involvement, engagement and participation definitions — University of Oxford, Medical Sciences Division.
Weber, M. (2021). El político y el científico. Madrid: Alianza Editorial.
World Health Organization (2016). Patient Engagement: Technical Series on Safer Primary Care. Ginebra: Licence CC BY-NC-SA 3.0 IGO.
Wynne, B. (1995). Public understanding of science. En S. Jasanoff, G. E. Markle, J. C. Peterson & T. Pinch (Eds.), Handbook of Science and Technology Studies (361-388). Londres: Sage Publications.
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