Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen

Swan, Melanie

doi:10.3390/jpm2030093

Cited by 327 publications

(216 citation statements)

References 26 publications

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“…Of note are studies organized by health social networks like PatientsLikeMe, which famously published a study analyzing the effect of lithium carbonate on ALS progression based on the self-reported data of its own members (Wicks et al 2011). For a number of enthusiasts, the potential of such initiatives to accelerate clinical discovery, generate data, monitor long-term outcomes of personalized interventions, or contextualize data obtained in clinical settings, makes them a new and important complement to traditional clinical trials and established forms of medical knowledge production (Wicks et al 2011;Swan 2012;Jain et al 2015;Ritter 2015).…”

Section: Greater (Self-)knowledge Vs Reductionism and The Non-impartmentioning

confidence: 99%

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

2016

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Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research.

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Section: Greater (Self-)knowledge Vs Reductionism and The Non-impartmentioning

confidence: 99%

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

2016

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“…In the discourse of the "digitally engaged" patient, empowerment becomes a set of obligations [30]. There is then a paradigm shift from "my health is my doctor's responsibility" to "my health is my responsibility and I have the tools to manage it" [33].…”

Section: P) Social Injunction To Autonomymentioning

confidence: 99%

Analysis of the Recomposition of Norms and Representations in the Field of Psychiatry and Mental Health in the Age of Electronic Mental Health: Qualitative Study (Preprint)

Morgiève¹,

Sebbane²,

Rosario³

et al. 2018

Preprint

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Introduction:For WHO, e-health would be seen as an effective way to improve therapeutic practices and prevention in health. Digital tools lead to major changes in the field of mental medicine. Specific analyses are required to understand and well accompany these changes. Objectives:Our objective was to highlight representations, actual uses and usability of e-health services and tools by the different stakeholders of the mental health care system, as well as to establish professional/user group profiles of these representations and uses. Methods:In order to access the representations, expectations and actual uses of different categories of actors, we carried out a qualitative study based on 10 Focus Groups (n=70, from 3 to 12 persons per group) composed of: general practitioners, psychiatrists, psychologists, social workers, occupational therapists, nurses, caregivers, users, user representatives, general public. The analyses of focus group discussions were performed independently by 4 investigators through a common analysis grid. The Constant Comparative Method was adopted in this framework. Results:The interviewees expressed different lines of tension that new technologies engender in the field of mental health. What was previously strictly under the jurisdiction of physicians tends to be fragmented and distributed over different actors and locations. New technologies reposition care in the field of domestic rather than therapeutic activities. The conception of care as an autonomous activity in the subject's life is thus questioned. The ideal of social autonomy through technology is part of the new logic of health democracy and empowerment, linked to a strong contemporary aspiration to performance. Participants emphasize the risk of a social injunction to autonomy for the digitally engaged patient, while empowerment may become a set of obligations. Conclusions:This qualitative research highlights the heterogeneity of opinions among the groups and inside each group. It suggests that the representations on e-mental health devices are still far from being stabilized and that a change management process should be set up to regulate the development and facilitate the optimal use of these tools.

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“…The SmartCoping app addresses two scenarios: 1. The prevention of chronic stress: The target group consists of individuals who are or feel threatened by stress or who are interested in measuring and documenting their vital as well as contextual data so as to increase their self-awareness and long-term health [38]. 2.…”

Section: Introductionmentioning

confidence: 99%

Mobile Stress Recognition and Relaxation Support with SmartCoping: User-Adaptive Interpretation of Physiological Stress Parameters

Reimer¹,

Laurenzi²,

Maier³

et al. 2017

Proceedings of the 50th Hawaii International Conference on System Sciences (2017)

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The paper describes a mobile solution for the early recognition and management of stress based on continuous monitoring of heart rate variability (HRV) and contextual data (activity, location, etc.). A central contribution is the automatic calibration of measured HRV values to perceived stress levels during an initial learning phase where the user provides feedback when prompted by the system. This is crucial as HRV varies greatly among people. A data mining component identifies recurrent stress situations so that people can develop appropriate stress avoidance and coping strategies. A biofeedback component based on breathing exercises helps users relax. The solution is being tested by healthy volunteers before conducting a clinical study with patients after alcohol detoxification.

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Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen

Cited by 327 publications

References 26 publications

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare

Analysis of the Recomposition of Norms and Representations in the Field of Psychiatry and Mental Health in the Age of Electronic Mental Health: Qualitative Study (Preprint)

Mobile Stress Recognition and Relaxation Support with SmartCoping: User-Adaptive Interpretation of Physiological Stress Parameters

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