Titulo Estágio
EndoVis - Visualising health data and lived experience of endometriosis patients through co-design
Local do Estágio
Rua Alfredo Allen 455/461, 4200-135 Porto, Portugal
Enquadramento
Abstract:
Endometriosis is characterised by a chronic inflammatory state within the peritoneal cavity(1)(2), with possible systemic chronic inflammatory effects, inducing adverse effects on other tissues or body systems. (3)As such, and considering chronic inflammation is a risk factor for various degenerative, such as atherosclerosis, multiple cancers, dementias, degenerative joint diseases, inflammatory bowel diseases, and others, endometriosis is a potential risk factor for a spectrum of other diseases that may adversely impact the health of women across the lifespan.(3)
Furthermore, the complex, multifactorial nature of endometriosis, combined with a lack of unique symptoms that overlap with differential conditions, and with no correlation between severity and symptoms(4) leads to uncertainty, frustration, and exhaustion when those suffering from this condition reflect and attempt to make sense of their own disease experience, creating an emotional toll.(5)
With a complex and protracted diagnosis (~7 years) means that the patient has a heavy burden in advocating for themselves, often while navigating various healthcare professionals, while keeping and managing records of their health data and its various possible symptoms.(5)
While there are several technologies aimed to improve women’s menstrual wellbeing (often used by endometriosis patients), these are ill-prepared to deal with the wide range of symptoms that a patient with Endometriosis may experience(4), while endometriosis-centred technologies are scarce.
Literature has indicated that the complexity of this scenario presents a design opportunity: to enable those leaving with endometriosis to visualise, explore, and engage with their own health data, in order to generate insights useful for for clinical discussions or directly integrating into care activities.
Objetivo
Objectives:
As such, this thesis proposes, through a Value Sensitive Design (6) approach, the development of visualisations of endometriosis patients’ self-reported health data, in order to understand the relationship between patients data, what values are designed into these visualisations, how these values are communicated, and their effect on the humans interacting with these visualisations. To this goal, the student will follow participatory and iterative methods guided by D’Ignazio and Klein’s principles (7) exploring speculative visual representations of health data and lived experience. This will be through 1) interviews with people suffering from endometriosis, 2) visual elicitation tasks where participants will be asked to represent several aspects of their experience with endometriosis, 3) transformation of these artefacts into visual schemas, 4) further interviews in which these schemas will be presented to the participants to elicit qualitative insights. The produced artefacts and resulting insights from participants will constitute the main deliverables of the project.
Innovative aspects:
The MSc’s contribution to knowledge will be on how to best create visualisations that represented the health data and lived experience of people suffering from endometriosis, and an inquiry on how these visualisations embody values.
Plano de Trabalhos - Semestre 1
Workplan:
1. Literature review on visualisations for personal, self-tracked health data, and State of the Art on technology for mananing and self-care of endometriosis or related issues;
3. Interviews with endometriosis patients and healthcare professionals;
4. Workshops for visual elicitation;
5. Design of visual schemas;
6. Interviews with participants;
7. Dissertation and publication writing.
Plano de Trabalhos - Semestre 2
Workplan (cont.):
1. Literature review on visualisations for personal, self-tracked health data, and State of the Art on technology for mananing and self-care of endometriosis or related issues;
3. Interviews with endometriosis patients and healthcare professionals;
4. Workshops for visual elicitation;
5. Design of visual schemas;
6. Interviews with participants;
7. Dissertation and publication writing.
Condições
Profile:
- Background in multimedia, communication design, or a similar area.
- Inquisitive and curious mind.
- Experience in interaction and interface design and, ideally, in human-centred processes.
- Proficiency in English.
Observações
References
(1) I. Ilie and R. Ilie, “Cytokines and endometriosis—the role of immunological alterations,” Biotechnology, Molecular Biology and Nanomedicine, vol. 1, no. 2, pp. 8–19, 2013.
(2) H. Kobayashi, Y. Higashiura, H. Shigetomi, and H. Kajihara, “Pathogenesis of endometriosis: the role of initial infection and subsequent sterile inflammation (Review),” Molecular Medicine Reports, vol. 9, no. 1, pp. 9–15, 2014.
(3) Hughes, C. L., Foster, W. G., & Agarwal, S. K. (2015). The impact of endometriosis across the lifespan of women: foreseeable research and therapeutic prospects. BioMed research international, 2015.
(4) Hine, A., Bowles, J., & Webber, T. (2023). The Need for a Non-Invasive Technology for Endometriosis Detection and Care. In Caring is Sharing–Exploiting the Value in Data for Health and Innovation (pp. 103-107). IOS Press.
(5) Pichon, A., Schiffer, K., Horan, E., Massey, B., Bakken, S., Mamykina, L., & Elhadad, N. (2021). Divided we stand: the collaborative work of patients and providers in an enigmatic chronic disease. Proceedings of the ACM on human-computer interaction, 4(CSCW3), 1-24.
(6) Friedman, B., Kahn, P., & Borning, A. (2002). Value sensitive design: Theory and methods. University of Washington technical report, 2, 12.
(7)Catherine D’Ignazio and Lauren F. Klein. 2016. Feminist data visual- ization. Position paper presented at the Workshop on Visualization for the Digital Humanities (VIS4DH), co-located with the IEEE VIS ’06 conference.
Orientador
Ricardo Manuel Coelho de Melo
ricardo.melo@aicos.fraunhofer.pt 📩