Box 4.

Experience of patient and public involvement from Centre for Patient Reported Outcomes Research patient partner Gary Price.

Due to my profession as an engineer, I engaged in using patient reported outcomes when I was diagnosed with serious illness. As it was going to be a long process of intense treatment and (hopefully) recovery, I decided to create my own list of outcomes for physical, mental and wellbeing, then monitor myself to see how the drugs were affecting me long term. Each day I would rate myself adding in my blood test results along the way. I would send these to the clinicians every few days.

At first the team of clinicians that were treating me would have a bit of a laugh with me about my charts and graphs, but within a few weeks based on my outcomes they were using my results to discuss with me how to continue the treatment. This in turn meant they could see from a patient’s point of view and feeling, exactly what was going on, there were no surprises, no reason to see me for the sake of seeing me and more importantly I could continue receiving the high doses of drugs that saved my life.

Two years after my recovery, based on my recent illness experience and how I had dealt with it, the consultant who treated me asked if I would consider contributing to patient public involvement for a cancer trial. Through this I met Professor Calvert who was developing a proposal for a new research centre for patient reported outcomes research and I was invited to contribute to the centre strategy. After initial meetings and understanding of what this involved and how it will help patients and clinicians in future, I gladly accepted the role and have been involved in the centre ever since. Four years on and I consider myself very fortunate to be a key part of a team that has the patient at the core of its strategy. I have been able to see how more and more health sectors that the Centre for Patient Reported Outcomes Research engage with are realising the advantage of having a formal and structured patient public involvement, introducing a new dynamic to how patients are viewed and treated. I have been able to see at root level how patients are involved from concept of trials to delivery and how the clinicians value their input.

Finally: There are other advantages that sometimes can help play a part with patient public involvement. Take the case of myself, as part of my day-to-day job I have gained a lot of experience within condition monitoring and asset management industry. From this I have been able to channel a lot of my knowledge into helping and contributing to the research that the Centre for Patient Reported Outcomes Research is doing on remote monitoring, data collection and analysis. I believe I am a good example of patient public involvement where a patient not only has experience of a serious illness but also has experience of the work that the team is doing.

Gary Price, Centre for Patient Reported Outcomes Research patient partner