With funding from Kidney Research UK, researchers have discovered social media could help healthcare professionals understand and respond to the questions and concerns of kidney patients.
In a recent study published in Kidney International Reports, a team of researchers from the Universities of Salford, University of Leicester and the Royal London Hospital analysed comments from a Facebook support group for IgA Nephropathy to identify the gaps in patients’ knowledge about their condition.
The team discovered patients used the group to seek information from peers on various topics. The analysis of posts and comments highlighted different gaps in knowledge to those identified in traditional patient focus groups – hence studying these social media groups could reveal more ways to provide information and better support patients.
Traditionally, medicine has been organised around particular diseases rather than the patients themselves. Kidney healthcare providers are working hard to shift this perspective and make care more patient centred. But to do this, we must understand patients’ preferences, needs and values. Traditionally, providers have collected this information using a variety of methods, such as focus groups, questionnaires, and interviews but often these don’t capture patients experiences and needs as they develop.
Patients with kidney disease, especially rare diseases, are turning more and more to social media for peer support and information. This has been a particularly useful support during the pandemic when face-to-face support has been limited.
The research team realised that, as well as being a useful tool for sharing information, social media could be used to understand the questions, needs and concerns of patients.
In this study, with permission from the administrators, the team anonymously collected and analysed nearly 2000 posts and comments posted from around 500 users in the IgA Nephropathy Support UK Facebook Group to find out the information gaps and unanswered questions of patients with IgA nephropathy.
Dr Cristina Vasilica, a Lecturer in Digital Health at the University of Salford, said:
“Social media platforms represent sources of information and support for people living with a long-term health condition. In this study, we utilised a novel digital approach to understand the unmet needs of patients with IgA nephropathy and co-create open-access resources to address the gaps.
“Importantly, the approach can be replicated for other conditions; it offers an untapped opportunity to gather intelligence on how to better shape services to meet the needs of service users.”
The results of the study showed that patients were using the Facebook group to find out information about diet, symptoms (particularly pain), diagnosis, treatment, and comorbidities. Patients were also frustrated that doctors often dismissed symptoms that weren’t directly related to their kidney condition.
The group spotted different gaps in knowledge to those that traditional patient focus groups had identified – which shows studying social media groups could spot ways to provide better information for patients.
Professor Paula Ormandy, Professor in Long Term Conditions Research and Director of Postgraduate Research at the University, said: “We demonstrated, working with kidney patients, that information needs exposed by social media can be targeted to develop key educational materials to fill gaps in knowledge.”
