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Patients' work and fluid trajectories: Access to medicines for oncological and rare diseases in Russia

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  • Temina, Olga
  • Zvonareva, Olga
  • Horstman, Klasien

Abstract

Health policy studies usually conceptualise access to medicines as a result of the institutional configuration of policies, legislation, and pharmaceutical markets. This study adopts a different approach that stems from the sociology of health and Science and Technology Studies (STS). Based on an ethnographically inspired qualitative research of access practices of patients with oncological and rare diseases in Russia, we argue that access to medicines is a fluid and unstable trajectory constructed by the everyday practices of patients. Instead of seeing patients as passive recipients of institutionally arranged access, we focus on their practices of building access and identify four types of work they do to steer their access trajectories in the desired direction. These types of work include persisting work, complying work, adjusting work, and knowing work. In many studies of access, these types of work remain invisible, and thus the efforts and skills that patients need to make access possible remain unnoticed, undervalued, and unaccounted for.

Suggested Citation

  • Temina, Olga & Zvonareva, Olga & Horstman, Klasien, 2023. "Patients' work and fluid trajectories: Access to medicines for oncological and rare diseases in Russia," Social Science & Medicine, Elsevier, vol. 317(C).
    • Handle: RePEc:eee:socmed:v:317:y:2023:i:c:s0277953622009194
    DOI: 10.1016/j.socscimed.2022.115613
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    References listed on IDEAS

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    1. Strauss, Anselm L. & Fagerhaugh, Shizuko & Suczek, Barbara & Wiener, Carolyn, 1982. "The work of hospitalized patients," Social Science & Medicine, Elsevier, vol. 16(9), pages 977-986, January.
    2. Moors, Ellen H.M. & Kukk Fischer, Piret & Boon, Wouter P.C. & Schellen, Frank & Negro, Simona O., 2018. "Institutionalisation of markets: The case of personalised cancer medicine in the Netherlands," Technological Forecasting and Social Change, Elsevier, vol. 128(C), pages 133-143.
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