Last week, INVOLVE , the national advisory group that supports greater public involvement in NHS, public health and social care research hosted a meeting of public involvement leads from across the National Institute for Health Research (NIHR).
Simon Denegri, who chairs INVOLVE and is also National Director for Public Participation and Engagement in Research blogged about the event, and asked us all in his summing up to “have conversations about today”.
One of the conversations we were having on the day was about how we can get patient and public involvement (PPI) as an activity – and opportunities to do it – better known to those who might take part? My heart always slightly sinks when faced with such challenges as – for those of us who live and breathe PPI – it can be easy to forget that they are a problem.
Until, that is, the eyes of my dinner party neighbour glaze over as I try to explain the finer points of lay co-design or why it matters that we don’t let sceptical researchers get away with arguing that there is nothing a patient can tell them about research that they don’t already know.
I’m hoping that our local Thames Valley website will help to spread the PPI message in Oxford, but I don’t underestimate the hurdles. Aside from the sceptics, we’ve already found it hard to gather content for the site from those doing PPI who want to hook up with patients, but I am sure it will get easier once the site goes live and both researchers and patients can see where their activities or wishes fit in.
We will then need to decide how best to publicise the site’s existence and get folk to take a look when they probably have plenty else to be getting on with, while also ensuring we promote PPI opportunities to those who prefer paper to a computer screen and for whom a website won’t work. We are currently sorting out all this and more, in discussion with our partners across the local NIHR family and with input from INVOLVE who have experience from their national site, People in Research.
On the wider question of raising the profile of PPI, I was interested to hear from one delegate that free cinema tickets are often given to nurses, taxi drivers and hairdressers. Why? Because they talk to lots of people in their work and can be wonderful advocates and publicists.
Imagine a fleet of taxis with PPI posters on the back of the flip-up seats, hairdressers swapping chat about where you’re holidaying to banter about the latest James Lind Alliance priority setting partnership. And of course nurses couldn’t be better placed to spread the research and PPI word, and many already do.
Part of the importance of finding new ways to do this is that we urgently need to address one of the other topics of the day – reaching those who tend not to get involved. The last word must go to Tina Coldham, a mental health user consultant, trainer & researcher who pointed out that we either need to swap the term “hard to reach” for “seldom heard” – or get better at reaching.