Public involvement: do your parents know where you are? #CochraneForAll

Over a thousand people will be converging on Edinburgh in Scotland today for the Cochrane Colloquium.

From the outset the organisers have committed to running the event according to ‘Patients Included’ principles. It shows. The public involvement content in the programme is more filling than a Scotch Broth. Attendees will need to pace themselves that’s for sure. Which will be difficult for many, given our tendency in public involvement to give 150%, to work 24/7, in spite of the conditions.

I see that one of the keynotes is by Jennifer Johannsen and is titled ‘The trouble with patient and public involvement.’ Jennifer has written incisively and even-handedly on this topic before and I am sure it will be a treat. Anything that challenges us to improve what we do must be good thing.

Of course one of the most beautiful and exciting things about public involvement is that it is trouble so to speak. We are trouble. We are here to challenge. I like to think that there’s a little bit of the ‘anarchist’ in all those who ascribe to the philosophy of public involvement. Encouraging local anarchy that will hopefully lead to national and international change is what we do.

As a teenager if people asked me ‘Do your parents know where you are?’ I knew I was probably in the right place. Because they didn’t! I sort of feel the same about public involvement – we should be where we are not ‘supposed’ to be. Remember that, the next time someone questions why you are at a meeting – patients are not always right, but they always have a right to be at the table making decisions with others.

As our movement matures, there is another proverbial question in my mind. One to which we need to be able to articulate our answer clearly if progress is not to be frustrated. Namely, ‘Do your parents know what you do?’

I know I struggled for years and years to be able to answer this question even when I was in communications! Go figure. Often my answer would trail off into a mumble. Being English an overriding feeling of the need to apologise was never far away. It must have all seemed very confusing to those I met informally not just my mum and dad. I was jealous of those who could simple say ‘I’m a pilot/writer/fisherman/teacher – delete as appropriate.

In a professional or institutional context I suspect we are a victim of the same apprehensions and hesitancy. As others are too of course. Last week I tweeted about my ride in a lift with a newly-met colleague. When asked what he did, he ran out of floors before he’d got to the end of explaining the acronym that was the name of his biomedical organisation. It was only six floors, but by rights one or two floors should be enough. I felt for him. Well, maybe not that much. He’s got ¬£millions behind him.

(Which reminds me, great to hear that the Colloquium started today with a commitment to bust any jargon over the course of the next few days)

The critical analysis of patient and public involvement is incredibly important. We need to understand what lies deep inside the wood. The continued growth of our movement is also essential. The associated noise and activity exciting. But we should be wary of inadvertently creating a discordant wall of sound that even the most sympathetic audience finds it difficult to listen to. Clarity of purpose and communicating what we do with confidence and a desire to connect is never more important than it is today.

Last week I had to talk to a group of senior policy-makers and decided to head off-off the usual questions about ‘how could I possibly represent or reflect the views of thousands if not millions of people.’ ‘That’s not my job, I said. My role is to create the right environment in which patients and public are not just listened to, but involved in making decisions. I think it worked. I think the floor opened up to patient and public viewpoints in the way I hoped it would. But I know that I have to start afresh each day. There’s always someone hearing it for the first time.

You will find your way I am sure. I still use INVOLVE’s definition of public involvement about research being research ‘with’ or ‘by’ patients, carers and the public. Simple is best in my experience. One floor should be all that it takes.

So, tell me, what do you do?

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