A patient-centred approach

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.

Healthcare providers have collected this information using a variety of methods, such as focus groups, questionnaires, and interviews. But patients don’t always feel comfortable sharing their needs when they feel they are being observed.

Using social media for medical information

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.

IgA nephropathy predominantly affects young adults

IgA nephropathy is a rare disease that causes inflammation of the filtering units of the kidney. As it tends to affect young patients who are more likely to use social media, this was a good patient group for the team to test their first-of-its-kind social media-based research method.

Identifying information needs

In this study, with permission from the administrators, the team anonymously collected and analysed nearly 2000 questions and comments posted from around 500 people in the IgA Nephropathy Support UK Facebook Group to find out the information gaps and unanswered questions of patients with IgA nephropathy.

Dr Matt Graham-Brown from the University of Leicester, who led the study, explains: “We analysed the questions patients with IgA nephropathy were asking, the conversations they were having and how they supported each other with information and advice.

“Importantly, this Facebook group has grown organically and functions as a support network for people with IgA nephropathy. Because it is free from doctor or researcher input, we could be confident that the questions being asked, and the comments made were free from the influence of doctors and researchers.”

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 (other conditions related to their IgA nephropathy diagnosis). 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.

Matt said: “Having identified important knowledge gaps for patients with IgA nephropathy, we were able to create some video resources to answer the specific questions people were asking. The methods we used are also brand new and can be used as a template in other diseases to identify the specific needs of populations of patients with a specific disease. We are proud to have completed this important work with the support of Kidney Research UK.”

Find out more

Read the full paper.