A while back my GP was referring me to hospital for some (long forgotten) ailment and, asked, ‘Which hospital do you want to go to?’ My answer? ‘I don’t care, just the one that is best in this specialty.’
She was offering me a choice. A choice I chose not to take up. But what is important I was involved in my care and had a say in it. I had a voice and my voice was listened to. My choice was for her to use her knowledge to make the best clinical choice for me.
The incident sprang to mind when COVID-19 hit us. My job is to make patient involvement happen in research in such a way it is a positive experience for all and has a real impact on research. It is only right that we try to do this in these difficult times. The need for PPI does not suddenly stop because of some seriously nasty bug.
But as we set off on the battle with COVID-19, I did wonder how on earth we were going to pull that one off. We quickly pulled together a group of patients to look at COVID-19 research but I still didn’t have an answer.
Then one patient said: ‘We don’t want to hold up Covid-19 research’. Very understandable. There was a fight on – to get research off the ground at breakneck speed to save lives in the hospital and to save lives in the future. Inappropriate and clumsy involvement would feel like jumping in front of a fireman rushing to pluck someone from the flames.
But patients and the public must be given a voice in research. I certainly don’t think we should ask patients to choose not to input into COVID-19 research.
Giving people a voice does not have to hold things back. Sometimes giving people a voice is as simple as bothering to tell them what is going and actually asking, ‘What do you think?’
I’d like to think we have started to make this happen at UCLH. Our patient group are commenting on research protocols with a remarkable 24 hour turnaround, and have already effected changes to UCLH’s privacy policy and public information on the use of data.
The important thing is we have started up a conversation. A dialogue is by necessity two-way. We need researchers to speak with patients and the public, we need patients and the public to reply and we need researchers to listen. Surely only good will come of that conversation?
Fingers crossed. Who knows? May be COVID-19 research will prove all the better for it.
Rosamund YU is Head of PPI and Research Communications at the BRC
