A co-designed social media intervention to satisfy information needs and improve outcomes in patients with chronic kidney disease : a longitudinal study

Vasilica, CM; Brettle, AJ; Ormandy, P

Abstract

Background The number of people living with a long-term condition is increasing worldwide. Social media offers opportunities for patients to exchange information and experiences with others with the same condition, potentially leading to better self-management and improved patient outcomes, at minimal costs to health service providers. Objective This paper describes how an online network with a range of social media platforms was created, with the help of a group of patients with chronic kidney disease, and specialist professionals. The project evaluation considered whether information needs and health-related and social outcomes were met.
Methods
Longitudinal in-depth evaluation of the creation of the moderated network; observation
of the use of the platforms; self-efficacy surveys (baseline and 6 months); semistructured
interviews (at baseline and 6 months).
Results
15 patients and professionals participated in the co-design of the network (hub),
initially launched with 50 patients. Several platforms were needed to engage patients
at different levels, and encourage generation of information, with the support of
moderators. 14 separate patients participated in the evaluation. Satisfaction of
information needs through social engagement improved self-efficacy (in 13
participants) with better self-care and management of illness. Social outcomes
included seeking employment and an increase in social capital.
Conclusion:
An online network (hub) with several social media platforms helped patients with
chronic kidney disease to manage their condition. Careful design with users resulted
in a sustainable network with wider applicability across health and social care.

• Journal Article Type: Article
• Acceptance Date: Aug 21, 2019
• Publication Date: Jan 27, 2020
• Deposit Date: Sep 16, 2019
• Publicly Available Date: Feb 4, 2020
• Journal: JMIR Formative Research
• Electronic ISSN: 2561-326X
• Publisher: JMIR Publications
• Volume: 4
• Issue: 1
• Pages: e13207
• DOI: https://doi.org/10.2196/13207
• Publisher URL: https://doi.org/10.2196/13207
• Related Public URLs: https://formative.jmir.org/