‘A blind man led me to my destination’ and others stories in public involvement by medical research charities @CR_UK @AutisticaUK @AMRC #OnTheFrontFoot

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 grey stains on his clothes matched the pock-marks that covered his skin. He would not tell me his name. But he said he was descended from Michael Drayton, the Elizaethan poet, and one day found he could write beautiful poetry. He recited a few lines and then said he was going into town to get his car which hadn’t had an MOT for four years. He said his father was a hard man. We travelled on the bus together and he was steady as a rock standing in the aisle with his walking stick. I don’t think he was getting his car but I do think he was an old poet.  

My taxi driver this morning told me his story of being a refugee from war-torn Afghanistan. How his family had fled the Taliban and settled in Iran at first before moving here. He was thankful for the opportunities and freedom the UK had given him. But he worried at the changes afoot. He talked about the three major operations he had had over the last ten years, the last one for cancer. He was treated at the Royal Marsden and described the excellent care he received.  He said he kept smiling in hospital because it is important to keep a positive outlook, he said. He said that in Iran as a refugee it was impossible to get health care unless you were wiling to pay. I tipped him well because it seemed the right thing to do.

Then last week, I was walking from my office to a reception. Along the way I saw a blind man walking with his white stick. I offered to help him to where he was going and we got chatting.  He told me he was going to a talk about the use of smart phones for people with visual impairment. That he had recently signed up to become part of the 100k Genome Project. Or, more correctly, his doctor had signed him up. ‘How did you find it all?’ I said. ‘I was delighted,’ he replied.  We discussed data and people’s fears over use of data in research and he said no one should be worried when it is anonymised.  I dropped him off at Friends Meeting House in London and afterwards realised that he had been leading me as much as I had guided him. He knew exactly where he was going. I suspect he is the same with his physician.

All these conversations and stories were prompted by my mention of health research and what I do. Over the years, I have found it gets people talking.

It just so happens that the event I was heading to that day was Cancer Research UK’s celebration of its public involvement programme. Three years and £3 million on from its establishment the UK’s largest fundraising medical research charity has  produced a report ‘Involve, Innovate, Inspire’ which looks at what it has achieved and how much it still has to do. Recent work like its toolkit for researchers are an exemplar for others. But elsewhere the organisation has a way to go to turn its engagement with patients into work that is about strengthening and improving research. It was good to see Derek Stewart and other patient advocates there to support, challenge and encourage the organisation on its way.   You can find out about Cancer Research UK’s public involvement opportunities for people here. 

Now many other charities are setting out on their own journey to involve patients and the public.   Autistica recently came to see me about their new Discover Network which aims to bring researchers and people with autism, their careers and families, together to identify research that matters. It is early days in the project but, again, they have big ambitions for the future. Like so many organisations they are finding that patients are leading them to new opportuniities that they could not have found without them.  We talked at length about how they can involve people in the decisions the network takes and how to get more people on board.

The Association of Medical Research Charities (AMRC) has just published an excellent new pamphlet ‘On the Front Foot’ which looks at the rapidly changing face of the medical research charity sector which is now worth £1.5 Billion.  One of its key messages, a call to arms if you like is that: ‘ There is, in some charities, a root and branch recasting of what a medical research charity is about. The Next Generation Charity is more ambitious, more focused, and more networked than in the past, it embraces disruptive change and is driven by an overall patient centric approach aimed at delivering meaningful patient bene ts. Some charities today are further along that track, others are lagging slightly and all can bene t from this Report.’

It is a welcome statement backed up in the report by AMRC’s assertion that one of the success factors of the next generation of charities (in fact it lists it as number 1)  is their ability to focus on a patient-centric mission: ‘Clarifying that the core mission is to be patient focused in order to deliver radical improvements in patient outcomes.’  But it also states clearly the challenge ahead: ‘The clarion call of patient centricity has impacted many research strategies, peer review processes and, indeed, almost every decision made by some charities. A few question whether the pendulum has swung too far and if this patient focus has produced measurable impact. However, for the moment, the patient centric momentum seems unlikely to decelerate.’ 

Yes, we have much to do to with charities and patient groups to make this stirring in in our medical research sector a groundswell of change that will mean better research outcomes for patients and their families. Go help them.

To quote a close associate of my friend at the bus stop, the old poet: ‘And, now, let’s go hand in hand, not one before the other.’

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