Keeping patients and their needs at the heart of research is one of the foundation stones of the NHS.
The advantages are well known – but agreeing to take part in a study is still a leap of faith for a patient.
Salford Royal kidney patient Rob Finnigan is one of those who took the plunge – and his experiences have helped him back into paid work after a 10-year break, seen him speak at conferences and work closely with Kidney Research UK and the Health eResearch Centre to develop a number of projects.
In 2013 Rob was asked to get involved in a research project for the newly formed Greater Manchester Kidney Information Network. He quickly became much more of a partner in the project – Cristina Vasilica’s PhD study to assess GMKIN’s effectiveness –and he is also one of the mainstays of the group.
His involvement in representing patients, advising on research, speaking at events and running the website and social media have now helped Rob into a paid part-time job as a Patient Advocate with the British Kidney Patients Association (BKPA), helping patients to resolve issues and signposting them to sources of help.
It’s a challenging role that will eventually lead to an advocacy qualification but he will continue to support GMKIN too. That includes a new project funded by the BKPA that aims to update patients’ digital skills to help them back into the workforce.
He will also continue to be involved in research: “I enjoy the extra contact with the medical staff and developing a relationship with them – if you are involved you feel it is more of a partnership and I feel I’m treated with the utmost respect.
“When I started with GMKIN my aims always included developing myself and having something fresh to put on my CV. Now I find I always get out more than I put in – once you stick your head above the parapet, people start coming to you and there is the chance to get involved in some really interesting projects,” added Rob.
Having patients happy to help shape research as well as take part in it is something that’s very much valued by the renal team at Salford Royal. Renal Consultant Professor Phil Kalra said: “We are very lucky in having patients who are so keen to be involved as it helps to make sure our research is relevant to them and their care. Research would not happen without our volunteer partners and it’s important that we respect their knowledge and experience. Rob is a great example.”