Pinch, punch, first day of the month.

What better day to celebrate some ‘firsts’ that we have seen in public involvement and engagement this week?

To begin with, the excellent ‘Patients First’ conference on Monday hosted by the Association of Medical Research Charities (AMRC) and the Association of the British Pharmaceutical Industry (ABPI). It’s the first time these organisations have come together to focus on the patient and carer agenda in science and what a day it was. The significance of two of the most influential voices coming together for this reason and to hold such an event warts and all should not be lost on anyone at this time.

Then there is the speech at that meeting by the Health Minister, Nicola Blackwood MP. It’s the first time I know of in which a Government Minister has dedicated their speech to public involvement and engagement in research. A politically important moment indeed. You can read some of her remarks here. http://www.abpi.org.uk/media-centre/newsreleases/2016/Pages/Patients-health-and-research-experts-unite-to-put-patients-first-in-medical-research.aspx I could have pinched myself.

From the moment that arthritis patient Jane Taylor, spoke brilliantly at ‘Patients First’ about her experiences of being involved in research, until almost the very end, the conversation felt different to other ‘science’ events. Patients and carers shared the floor. They had much to say – as you might expect – about their needs and priorities for future research.

And here’s the rub. I heard a strong voice in that room that is getting ever stronger that it is not just treatments that matter but help and solutions to the struggles of living with ill-health: pain, fatigue, poor services, social care problems, respect, dignity. I could go on. For too long this agenda has been neglected, I heard them say. Jane Taylor was firm in her assertion that research needed to look beyond the clinical.

It is the same here in Canada where I have been attending the Ontario Support for Patient Orientated Research (OSSU) research day. Here we saw and heard patient stories from the excellent ‘Faces of Healthcare’ website – voices ‘screaming’ to be heard above a health and social care system that is often falling short: http://healthydebate.ca/faces-health-care.

Afterwards, patient advocate, Alies Maybee, talked passionately about the desire for an ‘open, fluid and much more rich’ relationship between researchers, health professionals and patients. And OSSU now has a splendid programme of projects which are geared towards an agenda that is much more patient driven than would have been seen before.

Back to England.

The week before ‘Patients First’ science heard that it was getting £2bn in new funding from the Government as part of its post-Brexit industrial strategy. It is without question great news particularly at such a difficult economic and political moment for our country. It is the proverbial rabbit out of the hat.

But the people, organisations and institutions with whom this money now rests must involve and listen patients, carers and the public in how it is spent. They must begin to address more convincingly these quality of life issues that are hanging over people, our health system and society ever more heavily. Not instead of, but alongside the important work done in the lab and on new treatments. They must do so with urgency. Otherwise patients and their families could be forgiven for thinking that science has chosen to walk on by.

Simon Denegri Sent from my Work iPhone
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