Mediating Pain: Navigating Endometriosis on Social Media.

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.

Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study.

Background: Myriad psychosocial and cultural factors influence personal ways of coping with chronic pain (CP). Mobile health (mHealth) apps facilitate creation of citizen laboratories outside clinical frameworks. However, issues of safety, privacy and technostress must be addressed. This attitudinal user study aimed to assess whether persons with persistent pain (PwPP) would be open to sharing qualitative and quantitative data about their self-management of CP via mHealth platforms. Methods: In March 2020, we invited PwPPs, their personal or medical caregivers, or those interested in the development of an app for researching alternative ways of self-managing CP to complete an anonymous survey. We formulated an attitudinal survey within the theoretical framework of stress to estimate whether the novelty, unpredictability, and risks of data-sharing via mHealth apps concerned users. Descriptive statistics (% Part/Group) were used to interpret the survey, and open comments were reflectively analyzed to identify emerging themes. Results: Of 202 responses (June 2021), 127 identified as PwPPs (average age 43.86 ± 14.97; 100/127 female), and listed several primary and secondary CP diagnoses. In almost 90% of PwPPs, physical and emotional wellbeing were affected by CP. More than 90% of PwPPs used alternative therapies (acupuncture, homeopathy, massage therapy, etc.). Attitude toward mHealth apps were positive even though nearly half of PwPPs were unfamiliar with them. More than 72% of respondents were open to using a health-related app as a research tool for data collection in real life situations. Comprehensive data collection (especially about psychosocial factors) was the most important requirement. More respondents (especially medical professionals) were concerned about health hazards of misinformation communicated via health-related information and communication systems (maximum 80%) than about privacy (maximum 40%). Qualitative analyses revealed several promises and impediments to creation of data-sharing platforms for CP. Conclusions: This study shows a general willingness among PwPPs to become partners in studying alternative pain management. Despite a generally positive attitude toward the concept of sharing complex personal data to advance research, heterogeneity of attitudes shaped by personal experiences must be considered. Our study underlines the need for any digital strategy for CP research to be person-centered and flexible.

Play the Pain: A Digital Strategy for Play-Oriented Research and Action.

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.