Expanding the Kidney Information Network (KIN) to Innovate and Drive Impact
The award-winning Kidney Information Network (KIN) connects >1000 patients in North-West England. Innovation funding drives the creation of KIN UK; multiple resilient micro-communities, improving health literacy/equitable information access for >10,000 people living with CKD, carers and clinicians. Bridging collaboration with leading charities/NHS Trusts to generate ‘live’ innovative sustainable research datahubs.
The Kidney Information Network is a joint venture between the University of Salford, NHS trusts and kidney patients in response to patient demand to develop a mechanism to enable them to talk to other patients and share experiences.
KIN micro-communities, set up as Facebook (FB) groups, connected via a KINET hub, service geographical locations. Cross-platforms are used: Twitter (@GMKINet), YouTube (Kidney Information Network) and Instagram to expand network reach. Three KINs (GMKIN, CaMKIN, LasCKIN) with >1000 patients currently exist, and York KIN is underdevelopment responding to increased national demand. Evidence demonstrates that KIN communities improve self-efficacy, build social capital, reduce isolation, improve mental health outcomes, increase users’ health awareness, and facilitate equitable access to information and support for people living with CKD. We will rapidly expand the reach and impact of KINs (>12-20 micro-sites, >10,000-20,000 people living with CKD) for, establishing KIN as a national network. The funding bridges collaboration with leading charities and NHS Trusts to generate long-term micro-community sustainability. The KIN expansion creates multiple ‘live’ datahubs: to collate longitudinal patient/carer experience data, test future novel research solutions (AI), increase digital research capacity embedding new fellows (carers/digital methods), explore new placement opportunities for students and social media clinician education.
Funder: RKE Innovation Strategy
Team
Principal Investigators:
Paula Ormandy – Joint PI
Cristina Vasilica – Joint PI
Co-investigators:
Lisa Garwood-Cross – Co-Investigator (Social Media)
Ian Drumm – Co-Investigator (use of AI)
Matthew Wynn – Co-Investigator (Digital Education)
Currie Moore - Co-Investigator (Carer Research Lead)
Rachel Katz (Research Fellow)
Rob Finnigan – Co-Investigator (KIN Founder/ NW Clinical Network Patient Voice Lead)
Andy Henwood – Co-Investigator (KIN Patient Moderator)
Holly Loughton – Co-Investigator (KIN Patient Moderator)
Heather Jayasekara – Co-Investigator (KIN Information Manager)
Partners
Kidney Care UK – Mr Paul Bristow
Royal Liverpool Hospital NHS Trust – Patti OKane, Dr Asheesh Sharma
Lancashire Teaching Hospitals NHS Trust, Dr So Beng, Lisa Morris, Louise Proctor
Salford Royal Hospitals NHS Trust – Dr Rachel Middleton
Hope Kidney Patients Association – Keith Pennington
Manchester Royal NHS Trust – Kidney Patients Association – Guy Hill
York NHS Trust – Mr Paul Laboi
Bradford NHs Trust – Dr John Stoves
Association of Nephrology Nurses (ANN UK)