What’s this screwed up ball of paper got to do with health data research? Read on.

‘I was averaging out at two meetings about digital per week before Christmas,’ said my friend over coffee. As she said it I mused to myself that it must be at least one a day by now.

Yes, 2019 has heralded more meetings, events and conferences about data, digital and AI than votes about Brexit in the House of Parliament. And that’s saying something. Let’s just hope we are making more progress.

I suspect the number of meetings is rising exponentially as the number of projects or initiatives grows. If my experience is to go by, most universities and institutions have so many different projects focused on ‘unlocking the power of data’ or ‘mining the rich seam of data’ it’s like the Gold Rush. Only I fear there is more hoarding than sharing going on. Although to be fair there also a lot of good intent around public engagement and involvement as well.

At a Patient Information Forum (PIF) Executive Circle meeting on Tuesday afternoon about Electronic Health Records (EHR) someone described the atmosphere as a bit like being in the Wild West. Yes, indeed, we are in ‘Digital City’ and if you’re a patient or member of the public walking down the street you are taking your life in your own hands. Data is flying everywhere. Do we hide indoors or ride out of town? Yee haw!

OK, let’s face it, I think we are more likely to stay and try and make this City a great one aren’t we? So perhaps we need a sherriff. Only trouble is that the nearest law-makers are some days ride away. Which means we need as citizens to begin to lay down our own rules and ways of working.

Two years ago I was asked by the Farr Institute (which has since evolved into Health Data Research UK) to Chair an international consensus meeting of patients, patient advocates, researchers, data experts and others to think about how to improve public involvement and engagement in health data research.

I remember it well for all sorts of reasons. The weather in Manchester was cold, wet and lousy (No, I said lousy not Lowry). Well, that wasn’t so memorable. But the meeting was a particularly challenging one to facilitate. Not because the delegates were misbehaving or difficult. It’s just that it was such a massive task to undertake and there were so many perspectives to bring together.

With the clock ticking down I could feel myself break into a cold sweat as I feared the worse: we would end up with having had yet another discussion about data and public involvement and engagement without any real outcome. There was only one thing for it. Screw up a piece of paper, give it to one of our delegates to say what they would like to see happen before passing it on. And so on and so on….

The result is this ‘Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research’ which was published in the International Journal of Population Data Science this week and which you can find here. Eight principles to support discussions about building relevant and appropriate public involvement and engagement in all health data research (as recently recommended by the Academy of Medical Sciences):

Have institutional buy-in

Have clarity of purpose

Be transparent

Involve two-way communication

Be inclusive and accessible to broad publics

Be ongoing

Be designed to produce impact

Be evaluated

I can’t claim to any special skills as facilitator. It was perhaps more desparation than anything that lead to this device. But out of desparation can come opportunity. In this instance it hopefully focused our discussion into eight principles which seem to have increasing importance and meaning at this time.

Perhaps they are also a metaphor for something else. That just because you are set on a particular path it doesn’t mean you can’t screw up a piece of paper and start again.

(I should add that the screwed up ball of paper is the very same one pictured above. Somewhow it seemed significant enough to take a photo of it)

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