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 considered whether information needs and health-related and social outcomes were met.
Methods: We performed a longitudinal in-depth evaluation of the creation of the moderated network, observation of the use of the platforms, self-efficacy surveys (at baseline and 6 months), and semistructured interviews (at baseline and 6 months).
Results: A total of 15 patients and professionals participated in the co-design of the network (hub), which was 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. In addition, 14 separate patients participated in the evaluation. Satisfaction of information needs through social engagement improved self-efficacy (n=13) with better self-care and management of illness. Social outcomes included seeking employment and an increase in social capital.
Conclusions: An online network (hub) with several social media platforms helped patients with chronic kidney disease manage their condition. Careful co-designing with users resulted in a sustainable network with wider applicability across health and social care.
Keywords: chronic kidney disease; co-design; long term condition; patients information needs; patients outcomes; self-efficacy; social media.
©Cristina Mihaela Vasilica, Alison Brettle, Paula Ormandy. Originally published in JMIR Formative Research (http://formative.jmir.org), 27.01.2020.