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Online support network for kidney patients wins award

Thursday 23 June 2016

An online support network described as ‘life changing’ by one kidney disease sufferer has won an NHS award for innovation.

The Greater Manchester Kidney Information Network (GMKIN), set up by academics Dr Cristina Vasilica, Postdoctoral Research Fellow and Prof Paula Ormandy, Professor in Long Term Conditions at the University of Salford, along with the Hope Kidney Patient Association, has won the Innovation Champion award for best use of social media at the NHS Health Education England Adult Learners’ Week Awards.

The scheme, funded by the British Kidney Patient Association and British Renal Society, involved creating one of the first projects of its kind in the country enabling hundreds of patients to provide each other with advice, receive digital training and support.

The site was created, enabling patients to register blogs, add comments and ask each other questions.  Clinicians have joined patients providing blogs and useful information, including articles about diet, developments at local hospital and active research projects.

Social media sites were also set up to support GMKIN, while digital training was provided to patients from across Greater Manchester who requested it, and some were even provided with tablets to enable them to use the site.

Rob Finnigan, aged 60, of Bacup, who suffers from polycystic kidney disease, said: “I had been suffering deep depression and had become a recluse because of my illness. I was not a Facebook fan but for some reason when the GMKIN Facebook group started, I joined it. A couple of weeks later there was a post asking for participants to take part in a research study – and I made a huge leap of faith and signed up.”

Rob, a former head of information security at a private bank, explained how GMKIN was life changing: “The benefits are both social and educational, you get feedback from other patients and share experiences, which helps because you know you’re not alone. And we share knowledge with each other and with clinicians in the network.”

Rob’s wife Audrey added: “Rob was difficult to live with for several years as he thought his life had ended - this has brought him back to life. It has given him self-esteem and quality of life. He is living with an illness but it is no longer controlling him.”

The GMKIN team was presented with the award by a judge from the Innovation Agency, Director of Communications and Engagement, Caroline Kenyon, who said: “Building a network on social media which has had such a profound impact on people’s lives and which has the potential to help many more people, is a fantastic achievement.”

GMKIN recently expanded to include the Manchester Royal Infirmary Kidney Patient Association and is planning to improve the site, after securing funding from Kidneys for Life Charity.

Dr Vasilica, Prof Ormandy and the team were keen to create a sustainable strategy, and therefore supported and trained patients to run GMKIN and handed over administration of GMKIN to Rob Finnigan and other patients.

Dr Vasilica, who carried out a study into the project’s effectiveness, said: “I developed the study to examine if social media provided a vehicle to spread and generate patient generated information and peer support which made a direct impact on people’s lives.

“My research identified that that it does. Engagement in GMKIN has a positive impact on people, contributing to increased self-efficacy, improved healthy behaviour and confidence to seek employment. One patient described GMKIN as a lifeline, others as life changing.”

Professor Ormandy said: “Before this network was set up, there really wasn’t anything like it for kidney patients.

“There are more than three million people today who are at risk because of chronic kidney disease, and even mild conditions can have a huge impact on people’s quality of life.

“This innovative project has brought together patients, healthcare professionals and researchers to help drive positive change in the local community. It demonstrated that the engagement of patients through innovative interventions had a positive impact on their life. Patients and carers have sent numerous messages to endorse GMKIN.”

Dr Vasilica said: “I hope that through winning this Innovation Champion Award, more people will be aware of the benefits of social media.  Thank you to all patients, including those no longer with us, and everyone who contributed to making GMKIN work. This award is for all of us.”