Introduction:
Managing long-term health conditions is a global challenge, which has necessitated developing innovative ways to deliver patient centred care. Social media allow patients to access and share personal experiences and peer support, with potential to feed back into the patient-centred development and improvement of healthcare services. The Cheshire and Merseyside Kidney Information Network (CaMKIN) was established in 2019 as part of the Kidney Information Network (KIN), providing CKD patients 24-hour online access to information and support regarding their condition.
Methods
A novel digital method (Vasilica et al., 2021) of a dataset retrieved from a CaMKIN patient Facebook micro-community (1,119 posts and 5,266 comments), complemented by a survey (61 CaMKIN members). The digital methods steps involved a framework analysis to create themes and subthemes, directed analysis of data, familiarisation and sense making.
Findings
Analysis of data identified four major themes and an additional 13 subthemes of impact.
Patients used the group to ‘improve understanding of their condition’ (theme 1) through sharing useful information, accessing information from lived experiences and organizing Q&A with health professionals.
The micro-community formed a peer support network with both, in person and online peer to peer support. This support extended to ‘encouragement of self-management of health’ (theme 2), including managing diet and fitness. Group members created their own healthy choices weight loss accountability group, adopting a supportive ‘weight watchers’ style. They encouraged each other to take proactive steps in self-managing their health recommending people to contact renal team or ring emergency line where necessary.
CaMKIN positively contributed to ‘improved health and wellbeing outcomes’ (theme 3), by providing a safe space to air frustrations, quell anxieties, and support each other’s mental health. This was important during the COVID_19 pandemic.
CaMKIN provided patients a ‘safe environment, outside clinical settings’ (theme 4), to share and receive health information related to their kidney disease or treatment. Throughout the pandemic, the group discussed or clarified information (with professionals on the network), reducing demand on the local services through the self-organisation that occurred within the group.
Survey results reinforced the Facebook dataset findings; most respondents benefited from access to health care information (86.9 %), which made them feel more informed about their condition (77.1%). Patients received valuable support from peers (75.4%). Almost half of respondents agreed that it reduced isolation and it contributed to management of mental health (48.8%).
Conclusion
This innovative micro-community helps CKD patients understand their condition better and improve health awareness through information sharing (peer and professionally developed) and peer support that contribute to increased self-management. Demonstrated through self-reported mechanisms, CaMKIN improved mental health and reduced social isolation. During the pandemic it offered patients a safe environment to develop understanding of the volatile situation to manage their health safely. The data provides insight into an untapped opportunity, recommendations include utilising the CAMKIN to further develop service provision and communication between hospitals and patients. Further research is required to roll out and evaluate embedding KIN into local service provision, and developing a patient network at a regional and national level
