By Simon Denegri, National Director for Patients and the Public and Chair of INVOLVE, NIHR

Published: 12 December 2016

One of the major themes in research over the last few years has been the increasingly open dialogue between charities, industry, patients, and patient groups.

From the ABPI/National Voices guide to collaboration ‘Working together, delivering for patients,’ through to the joint statement of inspiration for improving research by involving young people, and the close co-operation on shaping the Government’s Accelerated Access Review, industry and patients are finding common cause.

Within individual companies there is a growing business focus on how to involve patients and carers in research design and delivery. Boards are more engaged than ever before. Many are now appointing senior leaders to give the agenda focus and energy. Active collaboration between charities and industry on research projects is on the rise.

Last month’s excellent Patients First conference jointly hosted by the ABPI and AMRC was an opportunity to open up the conversation, to shine a light on the progress that has been made, to identify areas of weakness and to set aspirations for the future.

In fact, from the moment that the highly impressive Jane Taylor, Chair of the Patient Insight Group, Arthritis Research UK, told delegates ‘too often research is still done on the patient rather than with the patient’ you knew that this was going to be a different sort of conversation.  One in which patients and carers would be driving the agenda, asking the questions, shaping the solutions, grounding them in reality. 

The challenge from patients and carers on the day was typically candid. I noticed one of the resident artists on the day had captured the following quote from a patient dialogue: ‘It’s not just about the BIG CURE; it’s about the small things that help now.’ Another read: ‘We are ripe for a complete change of direction.’  In my own session, sponsored by the NIHR, patients and patient advocates highlighted the need for research to have much greater visibility across health and social care and for people to be presented with more opportunities to take part.

The Minister for Health, Nicola Blackwood MP, spoke in support of patients and emphasised their importance to the UK continuing to do world-class research that would benefit the health and wealth of the nation:

‘We know that only a determined, persistent deepening in our partnership with patients will bring further progress. I call on all of us who are here today – including myself as the Minister for Public Health and Innovation – to commit ourselves to reducing the disease burdens of our time by putting patients first.  Making patients central to our quest for better treatments and approaches to prevention.  Involving patients to build the evidence. Using that evidence. And acting on that evidence.Then patients – the people of our nation and beyond – will experience the benefit. Families, the NHS and the economy will all benefit.’

How well charities and industry work together on this ‘Patients First’ agenda will be an important determinant of the extent to which patient voice drives the UK's health research agenda over the next decade and beyond; a sobering consideration in light of Brexit and the forthcoming industrial strategy.

Together they have the scale, flexibility and influence across the health research system to make it so. But they must also heed Nicola Blackwood’s words that ‘we are not interested in mere warm words and tokenism.’ Indeed, patients will be the first to sniff out any insincerity or lack of authenticity. They must be full partners in deciding what happens next under the ‘Patients First’ banner.

As I travelled home after the conference I thought to myself how easy it is to forget how such an event would have been unthinkable just five years ago, that it is good to celebrate how far things have come. 

More importantly, though, there is no going back now.