Last week the Right Reverend James Jones KBE published his report ‘The patronising disposition of unaccountable power: A report to ensure the pain and suffering of the Hillsborough families is not repeated.’  It was commissioned by the Prime Minister, Theresa May, when she was Home Secretary so that the perspectives of the Hillsborough families would … Continue reading Comment: We can all learn from the Hillsborough tragedy including medical research. #unaccountablepower

I have met many people along the way this past week who have told me their story. Like the old man who waited with me at the bus stop near my home. He wore tracksuit bottoms and a crumpled open-neck short beneath a thin raincoat. I noticed he had no socks on and that the … Continue reading ‘A blind man led me to my destination’ and others stories in public involvement by medical research charities @CR_UK @AutisticaUK @AMRC #OnTheFrontFoot

24th October 2017 INVOLVE APPOINTS NEW CHAIR OF ADVISORY GROUP INVOLVE – the NIHR Co-ordinating Centre for the promotion and advancement of public involvement in health research – is delighted to announce the appointment of Tina Coldham as the new Chair of its Advisory Group. Tina is a mental health service user, research reviewer and survivor … Continue reading Congrats to @TinaColdham on her appointment as @NIHRINVOLVE Advisory Group Chair – news release #publicinvolvement

You can now find a storify of the tweet chat mentioned below that took place a few weeks ago here.   Not since Grolsch bottle tops on shoes (younger readers may have to look this up) have we seen a craze like this sweep the nation. Everywhere you go people are talking about ‘co-production.’ But … Continue reading What is co-production in research? New draft guidance, tweetchat storify #Qcopro

I decided not to break off from my painting holiday (well, two weeks of home decorating) to read the new Life Sciences Strategy. After all, how does the saying go about ‘watching paint dry?’ Now I have read it I really don’t know what to make of it. ‘Heavy,’ ‘dense,’ ‘technical’ are the words that … Continue reading It’s a life sciences strategy Jim but not as we know it, not as we know it.

I stepped down from the stage that night feeling like God's gift to public speaking. I had just given an on-message, word-perfect, resounding success of a talk. So much so I felt the applause could have been a little louder, a little more, well...grateful. After all, I had travelled a long way to be there. … Continue reading Speaking notes: the voice from the back of the hall #publicspeakingtips

I feel like I should presage this with some sort of Mark Twain statement that 'rumours of my death have been greatly exaggerated.' For, yes, although I am standing down as Chair of INVOLVE this year, I am continuing as the NIHR National Director for Patients and the Public. Plenty of time to go before … Continue reading Could you be the new Chair of INVOLVE? Apply Within! (PS: It’s the greatest role ever)

Last week a story caught my eye about how patients with metastatic cancer using a web-based reporitng tool had experienced longer survival rates and other health benefits.   The results were reported to the American Society of Clinical Oncology (ASCO 2017) Annual Meeting in Chicago and received a fair bit of attention in the specialist … Continue reading Can you cut through the static? Enter the #NIHRgetdigital competition and show others how it’s done.

PPI-inch PPI-unch, first day of the month! Get your public involvement in early ...... Doctors call it the 'doorknob syndrome.' That moment when a patient, as they leave the consultation room, opens up about the most worrying symptom or issue that is really behind their visit. I am sure I have done this on more … Continue reading PPI-inch punch, first day of the month

'I'm sorry Simon,' wrote a colleague in a group email in the friendliest of ways, 'but you are not a patient advocate.' Well, that was 25 years of my life well-spent then, I said to myself. I knew what they meant though. That the NIHR badge I wear, my role, goes before any lived experience … Continue reading I really must apologise for being a PPI professional. No, really I must it seems.

We have all become obsessed with strategies and plans of one sort or another don't you think? Thinking them, making them, writing them, hiding behind them.  And no sooner than a strategy is in place than some bright spark (like a bloody National Director) suggests a strategic review or the like?  A review of nothing … Continue reading How to give your public involvement in research a Spring clean? And the value of ‘stuff.’