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Simon Denegri's Lay review

The public, health research and democracy @SDenegri
February 29, 2012

Health Research Authority (HRA) stocks rise in first public flotation

The word on the street is that yesterday’s Health Research Authority (HRA) public and patient involvement workshop – it’s first public flotation if I can put it like that – was very successful indeed.  That has to be good news.  I think we should be encouraged that the team at HRA has barely got its feet under the table and is already consulting openly with people about the shape of things to come.  A quick win perhaps? If you were at the meeting, let me know if you agree.

You may wish to note that HRA have this week also published an open call for views and evidence on its priorities going forward and other key questions.  See here.  Actually, don’t just note it, please respond to it as well!

Meanwhile my good colleagues at TwoCan Associates today alerted me to the fact that the Mental Health Research Network (MHRN) have published TwoCan’s evaluation of their approach to public involvement (see bottom left on the page).  The report’s recommendations are admirably strong on practical suggestions for how public involvement could, and should, be strengthened.  Required reading in my view even for those outside the mental health arena.

Finally, last night, I was at an absorbing dinner held by the All-Party Parliamentary Group on Breast Cancer.  Discussion was varied; a lot focused on the use of patient data for research and for improving patient care.  As an aside, you might care to read a series of rather absorbing blogs from Forbes magazine in the States, written by Carolyn McClanahan, a physician, about their own Electronic Medical Records (EMR) and its roll-out.  I think there are more to follow.  Of course, we have one big advantage over our American friends and that is the NHS.

Back at Dining Room C and the All-Party Group Meeting….

I find these occasions so valuable in highlighting for me the things that people really care about – the pressure points – when it comes to such topics, much more so than a survey or poll.  Only through this sort of dialogue and conversation, can real understanding emerge and a consensus reached about the best approach to take.

But it also highlighted for me – as did my morning today, Chairing a chaotic but beautiful meeting about dementia registries – how people rightly expect simple and direct answers to simple and direct questions, that anything less than this can seem evasive in spite of our best intentions.  Even where there are uncertainties we must find a better way of contextualising it and putting it into plain English, so that people understand the parameters, the boundaries.

And hence my appause for the HRA in being ready to have a dialogue.  We might not like everything about the way it eventually decides to do things, but at least we have begun as shareholders recognised as having an important stake in what unfolds.  To continue the analogy, the task is now to ensure our shareholding pays a good dividend in the future.

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Health Research Authority (HRA) public engagement public involvement

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