scholarly journals Personalized participatory medicine: sharing knowledge and uncertainty

10.1186/gm285 ◽  
2011 ◽  
Vol 3 (10) ◽  
pp. 69 ◽  
Author(s):  
David Gurwitz ◽  
Jeantine E Lunshof
Keyword(s):  
Medicine Sharing ◽  
Participatory Medicine

scholarly journals Factors Driving Users’ Engagement in Patient Social Network Systems

Informatics ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. 8
Author(s):  
Ira Puspitasari ◽  
Shukor Sanim Mohd Fauzi ◽  
Cheng-Yuan Ho
Keyword(s):  
Social Network ◽  
Structural Equation ◽  
Clinical Manifestations ◽  
Behavioral Model ◽  
Self Determination Theory ◽  
Equation Modeling ◽  
Medical Professionals ◽  
Network Systems ◽  
Constructive Engagement ◽  
Participatory Medicine

Participatory medicine and e-health help to promote health literacy among non-medical professionals. Users of e-health systems actively participate in a patient social network system (PSNS) to share health information and experiences with other users with similar health conditions. Users’ activities provide valuable healthcare resources to develop effective participatory medicine between patients, caregivers, and medical professionals. This study aims to investigate the factors of patients’ engagement in a PSNS by integrating and modifying an existing behavioral model and information system model (i.e., affective events theory (AET) and self-determination theory (SDT)). The AET is used to model the structure, the affective aspects of the driven behavior, and actual affective manifestation. The SDT is used to model interest and its relations with behavior. The data analysis and model testing are based on structural equation modeling, using responses from 428 users. The results indicate that interest and empathy promote users’ engagement in a PSNS. The findings from this study suggest recommendations to further promote users’ participation in a PSNS from the sociotechnical perspective, which include sensitizing and constructive engagement features. Furthermore, the data generated from a user’s participation in a PSNS could contribute to the study of clinical manifestations of disease, especially an emerging disease.

scholarly journals Internet Usage by Patients with Multiple Sclerosis: Implications to Participatory Medicine and Personalized Healthcare

2010 ◽  
Vol 2010 ◽  
pp. 1-7 ◽  
Author(s):  
Izabella Lejbkowicz ◽  
Tamar Paperna ◽  
Nili Stein ◽  
Sara Dishon ◽  
Ariel Miller
Keyword(s):  
Multiple Sclerosis ◽  
Support Groups ◽  
Disease Duration ◽  
Internet Usage ◽  
Online Health Information ◽  
Online Information ◽  
Improve Symptom ◽  
Disabled Patients ◽  
Healthcare Optimization ◽  
Participatory Medicine

Online health information and services for patients were suggested to improve symptom management and treatment adherence, thereby contributing to healthcare optimization. This paper aimed to characterize multiple sclerosis (MS) patients Internet usage. Information regarding browsing habits, Internet reliability, and the medical team's attitude to information collected online was obtained by questionnaires from MS patients. Data was compared between nonbrowsers, browsers on MS topics, and browsers on non-MS topics only. From the 96 patients recruited, 61 (63.5%) performed MS-related searches. The most viewed topics were “understanding the disease” and “treatments”. Patients reported that the information helped coping with MS and assured them of the appropriateness of their therapy. Shorter disease duration was correlated with higher Internet activity. Disabled patients were more interested in online interaction with specialists and support groups. This paper suggests that MS patients benefit from online information, and it emphasizes the importance of resources tailored to patients needs.

scholarly journals Becoming Your Own Device: Self-Tracking Challenges In The Workplace

2018 ◽  
Vol 43 (3) ◽  
pp. 225-250 ◽  
Author(s):  
Steven Richardson ◽  
Debra Mackinnon
Keyword(s):  
Cultural Norms ◽  
Employee Productivity ◽  
Canadian Universities ◽  
Health And Wellbeing ◽  
Degree Of Acceptance ◽  
Active Worker ◽  
And Performance ◽  
Material Conditions ◽  
Participatory Medicine

Workplaces have long sought to improve employee productivity and performance by monitoring and tracking a variety of indicators. Increasingly, these efforts target the health and wellbeing of the employee – recognizing that a healthy and active worker is a productive one. Influenced by managerial trends in personalized and participatory medicine (Swan 2012), some workplaces have begun to pilot their own programs, utilizing fitness wearables and personal analytics to reduce sedentary lifestyles. These programs typically take the form of gamified self-tracking challenges combining cooperation, competition, and fundraising to incentivize participants to get moving. While seemingly providing new arrows in the bio-political quiver – that is, tools to keep employees disciplined yet active, healthy yet profitable (Lupton 2012) – there is also a certain degree of acceptance and participation. Although participants are shaped by self-tracking technologies, “they also, in turn, shape them by their own ideas and practices” (Ruckenstein 2014: 70). In this paper, we argue that instead of viewing self-tracking challenges solely through discourses of power or empowerment, the more pressing question concerns “how our relationship to our tracking activities takes shape within a constellation of habits, cultural norms, material conditions, ideological constraints” (Van Den Eede 2015: 157). We confront these tensions through an empiric case study of self-tracking challenges for staff and faculty at two Canadian universities. By cutting through the hype, this paper uncovers how self-trackers are becoming (and not just left to) their own devices.

scholarly journals How do the design features of health hackathons contribute to participatory medicine?

2017 ◽  
Vol 21 ◽  
Author(s):  
Karen Day ◽  
Gayl Humphrey ◽  
Sophie Cockcroft
Keyword(s):  
Data Storage ◽  
Success Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Personal Data ◽  
Participatory Development ◽  
Multiple Sources ◽  
Professional Perspective ◽  
Design Skills ◽  
Participatory Medicine

The Hackathon concept is attracting interest as a vehicle for participatory development in both Health and Information systems. Publically available datasets, cloud based data storage, and increasingly sophisticated analytical methods, combined with user friendly development tools for mobile devices are inspiring innovation in the participatory medicine space. This has the potential to disrupt traditional methods and deliver solutions more rapidly, and in a form more likely to meet requirements. In health applications this involves putting the patient and their supports at the centre of design. This work contributes to solving the challenges involved in bringing a diverse cohort of designers, developers, problem owners, healthcare providers, patients, and citizens together to solve user-driven self-care problems using technology. We use a descriptive case study approach focussing on two weekend-long hackathons dubbed “Health Hackathon: Solving Self-care”. We gather thick data from multiple sources according to the process defined by Geertz (1994) first, to provide a rich picture of the role of hackathons in participatory medicine and second, to contribute evidence to the practise of running a hackathon. Some key originalities of our work include seeking more candid responses via self-serve interviews. Through this, controversially, we noted a marked emphasis on the creative process over concerns for privacy and ethics around the personal data cloud created by hackathon products. We build on existing theories of participatory medicine and emerging methodologies for conducting hackathons to provide evidence of the efficacy of the hacking approach both in terms of outcome and team dynamics. Through interviews, observation, twitter feeds and a pre-survey, we identify a number of success factors including (1) group size, (2) maturity of the idea, (3) level of involvement of a mentor, and (4) involvement of students. In addition we identify five skills identified by successful health hackathon participants; knowledge, patient focussed skills, analytical skills, software design skills and professional perspective. In common with previous studies we find that there are considerable social benefits that accrue in running a hackathon. Participants meet new people and learn first-hand of the challenges and opportunities provided by the skill sets and work environments of others. This work builds on the existing body of research concerning hackathons and in particular work in the context of participatory medicine

scholarly journals Technologies for Participatory Medicine and Health Promotion in the Elderly Population

Proceedings ◽  
2018 ◽  
Vol 2 (18) ◽  
pp. 1198
Author(s):  
Naveira-Carro Eloy ◽  
Concheiro-Moscoso Patricia ◽  
Miranda-Duro MC
Keyword(s):  
Health Promotion ◽  
Elderly Population ◽  
The Elderly ◽  
Participatory Medicine

The progressive aging of the population [...]

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