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Successful social media digital health project rolled out in Liverpool on World Kidney Day

Mar 14, 2019

CaMKIN website
CaMKIN website

Since 2013, colleagues in the School of Health and Society Dr Cristina Vasilica, Prof Paula Ormandy and Rob Finnigan have been working with Salford Royal NHS Foundation Trust and Kidney Patients Associations as part of an innovative project to support kidney patients.

The organisations have worked in a joint venture to develop the Greater Manchester Kidney Information Network (GMKIN), which acts as a mechanism for patients to talk with other patients and share experiences.

Research carried out Dr Cristina Vasilica outlined the impact of this network on patients’ life. It showed that patients themselves contributed to information sharing, which had positive benefits for other patients. This included user-generated information regarding living with the condition, treatment options, recognition of symptoms and long-term expectation. Patients revealed that they turned to social media for help and online conversations helped reduce the fear of “not knowing”.

Prof Phil Kalra, Professor of Nephrology Academic Vice President, The Renal Association said: “GMKIN has been a fantastic advance in enabling communication with renal patients across Greater Manchester. It has provided an invaluable community in which patients can express their views, learn what others are thinking, and to gain advice on how to deal with issues. It provides an excellent platform to inform renal patients about ongoing local research opportunities, and this can only benefit the research teams and patients themselves.”

The GMKIN online community aims to improve the wellbeing for people and their families living with chronic kidney disease through an online peer support network, as well as fostering communications, sharing of information and promoting self-management of the condition.

Feedback from patients has been positive: “I've picked up more info on here in a week than I've had in over a year at my Centre!’ “It’s changed my life profoundly, from a virtual recluse to an active and engaged patient”

Moreover, the project has proved a success with national bodies. It won an Innovation Champion award for best use of social media at the NHS Health Education England Adult Learners’ Week 2016 and a prestigious Big Chip digital award in 2018. 

As a result, the GMKIN is being rolled out in Liverpool today (14.3.19) to serve the needs of patients across Cheshire and Merseyside and will be branded CaMKIN. It will run on Twitter, Instagram, a blog site and through a closed Facebook group and in the same way as the original network will allow users to both access and post information. The launch has been arranged to coincide with World Kidney Day.

A proud Cristina said: “It has been an amazing and rewarding experience to work with my colleagues, clinicians and patients to drive positive change in the local community through social media. This would not have been possible without the hard work and dedication of Rob Finnigan, the administrators and every single patient involved in the network. ”

To take a look at the Kidney Information Network, click here.