"Beyond pure health”: Exploring diagnostic pathways, quasi-medicalization, and patient expertise in dermatology

• Název práce v češtině: "Přes pouhé zdraví”: Zkoumání diagnostických cest, kvazimedicíny, a odbornosti pacienta v dermatologii
• Název v anglickém jazyce: "Beyond pure health”: Exploring diagnostic pathways, quasi-medicalization, and patient expertise in dermatology
• Akademický rok vypsání: 2023/2024
• Typ práce: bakalářská práce
• Jazyk práce: angličtina
• Ústav: Katedra sociologie (23-KS)
• Vedoucí / školitel: doc. PhDr. Dino Numerato, Ph.D.

Zásady pro vypracování

Contemporary medicine and public health spheres are experiencing paradigmatic shifts; from curative to preventive care, paternalistic to patient-oriented/personalized treatment, and biomedical to bio-psycho-social models. In dawn of the digital era, characterized by the proliferation of wireless devices and the Internet, healthcare technologies are moving from the sidelines to the center of health and illness procedures and conceptualizations. Simultaneously, individuals, patients, or for that matter, users, are meeting these machines in the middle, whereby the relation between the organism and the machine becomes the unit of analysis. (Hayles, 2006) By this notion, humans understand their bodies and health via technologies and their bodies and health return meaning and configure technologies via enactments of life in a dynamic interplay between what is human and non-human in a cyborg assemblage (Lupton, 2013). Consequently, the contemporary blurring of notions of medical authority, expertise, and understanding ought to be explored via the lens of diagnoses cases. Thus, this thesis will compare how traditionally diagnosed versus undiagnosed (including self-diagnosed) individuals understand their health position and integrate their self-construction into action in the context of dermatology. Further, inquiring where cyborg theory fits into conceiving related problems and solutions. Within the digitalization of healthcare, dermatology is emerging as a prominent area due to the nature of the practice; overall, dermatology is visually-bound, dealing with skin, hair, and nail conditions diagnosed and treated through measurements collected by a combination of clinimetrics (clinical data) and psychometrics (patient-reported data). The increasing accessibility of digital technology tools and social media platforms, including AI chatbots, mobile applications, and online health forums, therefore, places psychometrics as an area of rising curiosity. That is, patients gaining exposure to digitalized and mediated dermatological information may potentially bring rise to digital- ly-embodied health identities, whereby digital health technologies and patients, excluded from a traditional medical authority, are constituted through intra-acts (Barad, 2007), shaping patients’ healthcare choices and constructions. In practical terms, this may lead to self-diagnosis, self-assessment, self-management, and other “self ” related processes in connection to one’s personal health and identity. Moreover, studying the correlation between health, diagnosis, and technology may advance the under- standing of the role of cyborg theory in medicine.

Seznam odborné literatury

1. Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Duke University Press.
2. DeBord, L. C., Patel, V., Braun, T. L., & Dao Jr, H. (2018). Social media in dermatology:
clinical relevance, academic value, and trends across platforms. Journal of Dermatological Treatment.
3. Hayles, N. K. (2006). Unfinished work: From cyborg to cognisphere. Theory, Culture & Society, 23(7-8), 159-166.
4. Jutel, A. (2009). Sociology of diagnosis: a preliminary review. Sociology of health &
illness, 31(2), 278-299. / Jutel, A., & Nettleton, S. (2011). Towards a sociology of diagnosis: re- flections and opportunities. Social science & medicine, 73(6), 793-800.
5. Lupton, D. (2013). The digital cyborg assemblage: Haraway’s cyborg theory and the new digital health technologies. The Handbook of Social Theory for the Sociology of Health and Medicine, F. Collyer, Ed., Palgrave Macmillan, Forthcoming.
6. Lupton, D. (2016). The quantified self. John Wiley & Sons.

Předběžná náplň práce

RESEARCH QUESTIONS

I. How do the intra-actions between digital technologies and individuals in the context of dermatology shape constructions of their bodies and healthcare choices? Are there mechanisms at play?
II. Does diagnosis change the understanding of dermatological issues? If so, how and to what extent?

METHODS OF DATA PRODUCTION
As this thesis aims to gain an in-depth understanding of patients’ health choices and constructions concerning their intra-action with various digital technologies, qualitative methodology will be used as it is well-suited for narrative and experiential respondents’ accounts. To collect primary data, online focus groups (OFGSs)4 via ZOOM will be conducted after digitally scouting poten tial participants using non-random, convenience sampling. In particular, the sample will be through scavenging social media platforms and websites via personal and professional contact lists (i.e., ac- quaintances of individuals known personally or with the aid of the university/supervisor), as they must fit the criteria of using digital technologies for dermatological purposes. After the participants are collected, chat groups will be organized to further orient participants with the research aim, OFG instructions, and access to a blank consent form to be signed. In constructing the questions, attention will be paid to answering the research question and obtaining theoretically-sound and relevant data; this will be achieved via a secondary data review of sociological and medical literature supplemented with conversations with experts in both fields.

METHODS OF DATA ANALYSIS
The OFGs will be semi-structured and recorded in audio and video formats for two-stage transcription; in the first stage, the BEEY.IO tool will automatically convert the audio file into text, which will then be manually cross-checked and corrected by the researcher in case of errors. After that, the OFG data will be color-coded on the reQual software and followed by thematic analysis to identify patterns in the data and explore any relationships and associations among variables. Follow- ing these steps, the data will be visually represented by mind maps, tables, and other diagrams in addition to the reported findings and discussion sections. Since primarily inductive coding methods will be employed, inferences from theoretical literature will be drawn to further interpret results and base them on the current discourse.

ETHICAL CONSIDERATIONS
This research carefully addresses ethical considerations. Firstly, the participants’ confidentiality will be maintained by ensuring that all personal data will be anonymized and no identifying information will be made available in any research output. Secondly, all participants will be required to sign an informed consent form detailing the study’s aims and the procedures to be followed. Additionally, they will be notified of their right to withdraw from the study without facing any consequences. Thirdly, the study will consider ethical considerations associated with digital technology to ensure that participants are not exposed to potential risks or harm. Further, as health is a personal topic and may be sensitive to some, attention will be paid to ensuring questions are relevant, reminding participants that there are no wrong opinions or experiences, and allowing them to skip answering if desired; after the OFG, participants will be allowed to withdraw any information stated if they felt it does not represent their thoughts well or they wish to keep it private. Lastly, the research will follow the ethical guidelines set out by the university and relevant professional bodies.