With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.

The aim of this study was to engage older adults in discussions about digital serious games. Using a qualitative exploratory approach, we report observations from more than 100 h of conversations with individuals in the age range 65-90, in a study entitled "Finding better games for older adults" (June 2017-December 2019). Phase 1 (19 older participants, 3 young research students) involved conversations around a quantitative study of cognitive benefits of digital playing (minimum 6 h/person). Phases 2 and 3 involved a focus group in the form of a community class (10 weeks, 2 h per meeting), involving introduction to digital game genres, playing, and discussing motivations and obstacles for current and future play. Cognitive stimulation, emotional distraction and physical therapy were initially stated as the motives for game play. However, with growing familiarity and voluntary exchanges of personal stories between older and younger participants, the cultural significance of the medium of game (especially with story-telling and VR technology) became more important to older adults. More than mechanical inaccessibility, lack of access to the cultural discourse about games presents barriers for older adults. To create a safe, comfortable and accessible space for intergenerational learning and play is of primary importance both for users and designers, should serious games be considered for the future of digital care.

The value of understanding patients' illness experience and social contexts for advancing medicine and clinical care is widely acknowledged. However, methodologies for rigorous and inclusive data gathering and integrative analysis of biomedical, cultural, and social factors are limited. In this paper, we propose a digital strategy for large-scale qualitative health research, using play (as a state of being, a communication mode or context, and a set of imaginative, expressive, and game-like activities) as a research method for recursive learning and action planning. Our proposal builds on Gregory Bateson's cybernetic approach to knowledge production. Using chronic pain as an example, we show how pragmatic, structural and cultural constraints that define the relationship of patients to the healthcare system can give rise to conflicted messaging that impedes inclusive health research. We then review existing literature to illustrate how different types of play including games, chatbots, virtual worlds, and creative art making can contribute to research in chronic pain. Inspired by Frederick Steier's application of Bateson's theory to designing a science museum, we propose DiSPORA (Digital Strategy for Play-Oriented Research and Action), a virtual citizen science laboratory which provides a framework for delivering health information, tools for play-based experimentation, and data collection capacity, but is flexible in allowing participants to choose the mode and the extent of their interaction. Combined with other data management platforms used in epidemiological studies of neuropsychiatric illness, DiSPORA offers a tool for large-scale qualitative research, digital phenotyping, and advancing personalized medicine.

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