The Kidney Information Network (KIN) is a joint venture between patients with chronic kidney disease, clinicians and the University of Salford (led by Dr Cristina Vasilica, Prof Paula Ormandy and Rob Finnigan). KIN was initially set up in Greater Manchester (2013) as ‘The Greater Manchester Kidney Information Network (GMKIN)’. In 2019 we expanded to Cheshire and Merseyside area (CaMKIN).
KIN works to initiate positive social change within the local renal community of patients, who struggle with isolation and access to real life information such as coping mechanisms, expectations, symptoms. The community was built using social media, enabling patients to network, create and share information with each other and with clinicians.
GMKIN
GMKIN, initially started in collaboration with Hope Kidney Patients Association (HKPA) and then extended to MRI Kidney Patients Association (MRI KPA).
- Closed Facebook peer support community https://www.facebook.com/groups/543758388988691/
- Twitter account https://twitter.com/GMKINet,
- Blogging and news-sharing platform: https://kinet.site/blogs/
CaMKIN
CaMKIN started as a partnership with Royal Liverpool and Broadgreen University Hospitals.
- Closed Facebook peer support community https://www.facebook.com/groups/653509575068153/
- Twitter account https://twitter.com/GMKINet,
- Blogging and news-sharing platform https://kinet.site/blogs/
LaSCKIN
LaSCKIN was set up as a community for people with CKD, carers and families living in Lancashire and south Cumbria. The network is supported by the Renal Care departament at Lancashire Teaching Hospitals.
- Closed Facebook peer support community: https://www.facebook.com/groups/8249617731746772
- Twitter account https://twitter.com/GMKINet,
- Blogging and news-sharing platform https://kinet.site/blogs/
Continuous capacity building, through mentorship, empowerment of patient leaders, encourages self-belief, increases involvement and has strengthened the renal community online and offline. KIN is managed and led by patients, for patients, with the advice and support of a multi-disciplinary team (researchers, business partners, patients and clinicians).
The impact was captured via an in-depth research study (Vasilica, 2015), the model contributed to national guidance with NIHR INVOLVE, on use of social media (http://www.invo.org.uk/wp-content/uploads/2014/11/9982-Social-Media-Guide-WEB.pdf) and received Innovation Champion Award for best use of social media sponsored by the Innovation Agency, at the NHS Health Education England Adult Learners Week 2016 Awards and the BIG CHIP digital award in 2018.