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Internet, Expert Patient, and Empowerment: Activity Profiles in Virtual Communities of Chronic Kidney Patients

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The Internet and Health in Brazil

Abstract

In recent decades, the Internet has become an integral part of the daily lives of millions of people around the world, engendering multiple transformations. In the health sector, it is increasingly used as a source of information and advice. In this context, the “expert patient” stands out. This is an individual who becomes a specialist by conducting an extensive search for information about his health condition online and sharing his experiences in virtual communities. In the face of this setting, this chapter reflects on the relationship between empowerment, “expert patient,” and the biomedical model by examining two online groups on Facebook that include chronic kidney patients and their relatives, friends, and caregivers. It identifies the activity profiles of participants posting messages – the posters. We identify three “ideal types” of posters: one has a supportive nature, another is concerned with the clinical realm of the disease, and the third is committed to patient’s rights. The results indicate that supportive and clinical posters reiterate the biomedical order, while the citizen poster is concerned with the patient’s rights as a citizen.

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Notes

  1. 1.

    Paulo Freire (1921–1997) was a Brazilian educator and thinker, whose intellectual work was nationally and internationally recognized. He is considered, in the academic environment, a reference in the fields of “critical pedagogy, popular education and participatory action-research, as well as a basic reference of liberation theology, of Latin American critical theory and a precursor of the epistemologies of the South” (Altamirano 2016). In his extensive intellectual production, we highlight Pedagogy of the Oppressed (Freire 2015) and Pedagogy of Hope: Reliving Pedagogy of the Oppressed (Freire 1994).

  2. 2.

    Chapter 19 is dedicated to the issue of new information and communication technologies in health promotion.

  3. 3.

    Deepa Narayan is a senior adviser of “Poverty Reduction and Economic Management” (PREM) at the World Bank in Washington, D.C.

  4. 4.

    Issues of privacy and information security on the Internet are addressed in Chaps. 3 and 11 of this book.

  5. 5.

    For more about Netvizz, see https://apps.facebook.com/netvizz/

  6. 6.

    Available at: https://www.facebook.com/groups/1489994287957985/?ref=bookmarks

  7. 7.

    Available at: https://www.facebook.com/groups/hemodialisevida/

  8. 8.

    Amparus is a word written in Latin and means support.

  9. 9.

    Association of Patients, Recipients, Donors, and Organ- and Tissue-Transplanted People (AMPARUS): http://amparus.org/

  10. 10.

    Heparin is the most commonly used anticoagulant in Brazil. It is indicated to avoid blood coagulation and the formation of thrombi that can obstruct the blood’s passage or form emboli that can end up in the lungs, leading to death.

  11. 11.

    Hematocrit is a test that measures the percentage of red blood cells.

  12. 12.

    Chapter 13 addresses the issue of Internet and medicines.

  13. 13.

    Brazilian law guarantees that patients with chronic kidney problems receive sick pay, disability retirement (without a grace period), and exemption from payment of many taxes, including the income tax.

  14. 14.

    Article 196 of the 1988 Brazilian Federal Constitution.

  15. 15.

    Ordinance 1.168 of the Ministry of Health of June 15, 2004.

  16. 16.

    The “Social Integration Program” (PIS) is aimed at employees of private companies. This is a social contribution tax, paid by a legal entity, aimed at financing unemployment insurance, bonus payments, and employee participation in the revenue of the companies in which they work.

  17. 17.

    Available at https://www.youtube.com/watch?v=7tqApuvexhU

  18. 18.

    The mission of the Public Prosecutor’s Office, part of the Brazilian judiciary, is to defend the rights of citizens in relation to the offenses made by government representatives.

  19. 19.

    We kept the original spelling in the box when it was in capital letters.

  20. 20.

    In 2014, a dollar was worth 2.30 reals, the name of Brazil’s currency. Information was obtained on April 14, 2018, on the website http://www.acinh.com.br/servicos/cotacao-dolar

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Authors and Affiliations

  1. National School of Public Health, Oswaldo Cruz Foundation, Rio de Janeiro, Brazil

    André Pereira Neto

  2. Faculty of Nursing, Federal University of the Southern Frontier, Chapecó, Brazil

    Julyane Felipette Lima

  3. Institute of Scientific and Technological Communication and Information in Health, Oswaldo Cruz Foundation, Rio de Janeiro, Brazil

    Leticia Barbosa

  4. Faculty of Nursing, Federal University of Pelotas, Pelotas, Brazil

    Eda Schwartz

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  1. André Pereira Neto
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  2. Julyane Felipette Lima
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  3. Leticia Barbosa
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  4. Eda Schwartz
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Editors and Affiliations

  1. National School of Public Health, Oswaldo Cruz Foundation, Rio de Janeiro, Brazil

    André Pereira Neto

  2. Department of Political Science and International Studies & Department of Sociology and Anthropology, Georgia Southern University, Statesboro, GA, USA

    Matthew B. Flynn

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Pereira Neto, A., Lima, J.F., Barbosa, L., Schwartz, E. (2019). Internet, Expert Patient, and Empowerment: Activity Profiles in Virtual Communities of Chronic Kidney Patients. In: Pereira Neto, A., Flynn, M. (eds) The Internet and Health in Brazil . Springer, Cham. https://doi.org/10.1007/978-3-319-99289-1_6

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