By Henry Scowcroft, Science and Features writer at Cancer research UK

Published: 10 July 2019

Engagement, involvement, collaboration or participation? Patients, laypeople, public, consumers or just ‘people’? Do we know what we really mean with these words? Are we using them consistently? What, even, are we trying to achieve with them?

Language was a dominant theme at last month’s alliteratively plosive ‘Pioneering Partnerships: Putting Patients First’ conference. The event (itself a partnership between a veritable alphabet soup of public, private and charity organisations: NIHR, ABPI and AMRC) set out to “to inspire and inform the sector to better establish links with experts by experience, to create a more inclusive and relevant research environment”. All the attendees, regardless of background, shared a clear belief that research is better when it involves… let’s say ‘non-researchers’ for the sake of argument. We’d gathered to hear more about how to do this from people who’d been doing it or benefitting from it, and to discuss challenges faced so far, and challenges ahead.

For my part, I was there wearing an odd ‘hat’. I’ve worked for more than a decade in medical research communications, as a science writer at Cancer Research UK, before – in the cruellest twist of fate – crossing the line into the world of involvement, after my partner was diagnosed with, and died from, cancer herself. I’ve now rolled up my sleeves and got involved, sitting as a ‘consumer member’ of a research group run by the National Cancer Research Institute, or NCRI (more alphabet soup). Consequently, while neither patient nor consumer, I have Quite A Lot To Say about cancer. I’m currently trying to work out how best to say it, and to whom, so that some sort of silver lining can be derived from the whole thing.

So, the day itself. What were my key take-aways, other than an overwhelming sense of energy and progress?

We heard, first up, from two people for whom medical research was more than an academic or professional interest. Author Wendy Mitchell, who has early onset Alzheimer’s and who is an active collaborator and participant in research, reminded us early on of the importance of language and framing. Asking her community “would you like to be involved in research?” drew a blank, but when reframed as “would you like to change how dementia is treated in the future?”, a request for participation resonated much more strongly. The lesson? “Any positives from involvement can be cancelled out by one wrong word, one wrong field on a form,” she said. Involving people with direct experience in study design can boost study uptake, saving researchers many hours of work.

But of course, we all know this. We are all believers. And yet we still hear too many stories of ‘involvement opportunities’ that merely extend to commenting on a clinical trial’s Patient Information Sheet or lay summary.

The day’s events were given further salience by its exceptional host and second speaker Deborah James, aka ’bowelbabe’, co-presenter of the You, Me and the Big C podcast. Prior to her diagnosis with stage 4 bowel cancer, Deborah was a deputy headteacher and helped run a number of studies on teaching methods. This allowed her to draw a remarkable parallel – these studies were almost inevitably better, and more useful, when they involved pupils themselves. And yet this, too, was controversial within that field. Clearly the barriers to participative research extend beyond the domain of medicine.

There were other highlights too, and it’s a measure of the success of the day that I’m now reaching the proposed word limit of this article and wondering how to describe them all.

A session exploring whether patient involvement ‘makes a difference’ contained several nuggets. It raised the question, ‘difference to whom?’, floated a variety of statistics that made me want to wave a “[citation needed]” placard (we should surely be better at disseminating this stuff), and drew a comment from NIHR’s Simon Denegri that has stuck with me ever since: For Simon, the purpose of involvement goes much further then demonstrating incremental increases in study recruitment. “Proof of impact is fine, but we’re trying to change the culture of how research is done,” he said. “It’s just the right thing to do!” he said, pointing out that there’s never been a controversy about involving clinicians in research. Bravo Simon.

Autistica’s CEO, Jon Spiers gave a compelling talk about his charity’s decision to participate in a large industry-sponsored study, and its challenges and successes in bringing sections of the community with him in the face of considerable scepticism about pharmaceutical companies. He too spoke of the need for precise, appropriate language – ‘autistic people’, rather than ‘patients’ or ‘people with autism’ – and the need to do “the right thing, not the easy thing.”

A session about what is still called “Digital” healthcare contained much helpful insight, but also a lot somewhat abstract discussion. Deborah cut through it all with a single quip: “what would be great would be if you could stop me having to repeat my story over and over to different doctors.” Indeed.

Perhaps the day’s most laudable outcome was the fulfilling of a commitment made at the previous year’s event. Mike Thompson, chief executive of the APBI, had promised to review the patient involvement guidance his organisation gave to pharmaceutical companies, which was seen as opaque and overly restrictive. The result, launched on the day, is a co-created ‘sourcebook’ that – they hope – will open the door to more involvement in industry research. Thompson made further commitments to improving the ABPI’s guidance on closer working with the charity sector – tune next year, folks.

Overall it was, on reflection, an inspiring and informing day, with a clear sense of a community coming together. The question for me is, what next? As a networking opportunity it was first rate. As a platform for discussion, likewise. It reminded me of the digital media conferences I used to frequent back in the early 2000s, as the rise of free online publishing platforms opened up new opportunities for non-media organisations in a changing media environment. It was – for a time – a vibrant, exciting community – minds changed, horizons explored, platforms launched, attitudes shifted. Drawing the parallel further, it made me wonder what needs to happen to really ram home the point that these partnerships do make a difference. I felt like waving my metaphorical ‘[citation needed]’ placard more than once. Do we need a repository of case studies – or maybe an annual award? – so we can effectively collate and share our successes with those that need convincing? As much as Simon’s “right thing to do” may be true, I wonder if it will change minds as effectively as hard data and statistics.

We need to capture and bottle the energy and vitality at the Putting Patients First conference and direct it into real change, and find ways to convince the doubters who still see PPI as a box-ticking exercise, or only relevant to clinical research rather than, say, basic or translational research, or strategy design. Perhaps even a range of t-shirts bearing the day’s most memorable quote, from Wendy: “Being involved gives me back what my diagnosis took away: hope.” Try arguing with that.