Social Media - Study of Patient Experience Sharing
Author: University of Leicester : Contact: leicester.ac.uk
Research shows social media beneficial for sharing and building upon patient experiences.
University of Leicester research suggests patients often seek medical knowledge from social media platforms rather than traditional medical sources...
Twitter, Facebook and other social media platforms can be useful tools for helping patients with rare medical diseases exchange knowledge and build communities, research from the University of Leicester has found.
Patient experiences shared on digital platforms are also becoming a point of reference for other patients, sometimes in isolation of traditional medical sources, the study published in the journal Information, Communication and Society suggests.
The study entitled 'Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations' examined online interactions in rare disease patient organisations in order to interpret how and to what extent patient organisations exploit online networking structures to provide alternative platforms for people to find information on and discuss health issues.
The study suggests that digital media eases one-way, two-way and crowdsourced process of health knowledge sharing; provides personalised routes to health-related public engagement; and creates new ways to access health information - particularly where patient experiences and medical advice are both equally valued.
Dr Stefania Vicari from the University of Leicester's Department of Media and Communication, who led the study, explained: "This project shows the potential of online communication tools for isolated patient communities and the extent to which patients' experiential knowledge is becoming a point of reference for other patients, together with - or sometimes in isolation from - traditional medical sources.
"These forms of organisationally enabled connective action can help to build personal narratives that strengthen patient communities, the bottom-up production of health knowledge relevant to a wider public, and the development of an informational and eventually cultural context that eases patients' political action.
"Not only is patients' knowledge valuable for peer support within patient communities, it has the potential to add to traditional medical knowledge, especially in cases where this is limited - such as in the case of rare diseases."
The study 'Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations', supported by the Wellcome Trust and published in the journal Information, Communication and Society, is available here: dx.doi.org/10.1080/1369118X.2016.1154587
- 1 - Potential New Causes for TMAU - A Fishy Smelling Body Odor Disorder : Monell Chemical Senses Center (2017/02/15)
- 2 - Hope for Patients with Friedreich's Ataxia and Related Diseases : University of California, Davis (2017/06/08)
- 3 - New Bone Bandage Accelerates Repair of a Break : Duke University (2019/12/13)
- 4 - Folic Acid and Iodine in Australian and New Zealand Bread : Disabled World (2009/01/03)
- 5 - WellSpringboard - Crowdfunding Medical Breakthroughs : University of Michigan Health System (2016/06/10)
- 6 - Physicians Unfamiliar with Chagas Disease Survey Shows : The American Society of Tropical Medicine and Hygiene (2010/10/10)
- 7 - Chagas Disease and Dogs : Emory University (2010/07/12)
• Disabled World is strictly a news and information website provided for general informational purpose only and does not constitute medical advice. Materials presented are in no way meant to be a substitute for professional medical care by a qualified practitioner, nor should they be construed as such. Any 3rd party offering or advertising on disabled-world.com does not constitute endorsement by Disabled World.
• Please report outdated or inaccurate information to us.