Back in April we held a one day workshop, bringing together some of the members of Patients Active in Research (PAIR), our Patient and Public Involvement (PPI) strategy group with researchers or those who have PPI lead roles within the Biomedical Research Centre/Unit. I wrote about it (slightly gloomily…) here.
The main aim of the day was to find out how we could help researchers to do PPI in Oxford. We knew some were keen, and indeed some were active, but it became clear on the day that most, if not all, wanted help. First and foremost, they had a very understandable desire to connect with others like them: in many cases those who attended the meeting had been “given” PPI in addition to their main jobs. Simply finding themselves sitting next to someone else in the same boat was clearly reassuring.
Three key activities have followed and we are cautiously optimistic that they may mark a bit of a sea change in PPI locally, and perhaps further afield too.
Firstly, we have set up a network of PPI leads, but we won’t be too strict about membership: if a researcher keen to build PPI into their work but not leading on it for others wants to join, we will welcome them. The group’s overall aim is to put together those with PPI lead or co-ordination roles with their counterparts in the hope they can share highs, lows, practical support, advice and ideas.
Secondly, to help them and others, we have put together a set of eight “Briefing notes for researchers,” spanning topics from “When can I do PPI in the research cycle?” to “What is good PPI?” You can find them here and we’d really love to know what you think of them. If you do PPI, will they help you? If not, what would? Do tell us: only by knowing what you find challenging can we help. If you are a patient or member of the public and you read these notes, first and foremost, thank you for giving up your precious time to do so. But secondly, are there things missing that you think our researchers ought to be thinking about, or doing, differently? Do please let us know.
And finally, before the workshop, we asked research groups attending to bring case studies of their PPI. The main reason for this was that barely a day goes by when I don’t hear from a researcher some variation of “If only I knew what my colleagues were up to, I might be able to get my head round what PPI is/do it better/decide for myself whether it matters.” And it’s clear in research PPI as in so many other areas of life that hearing from those with a given experience can be truly illuminating.
We asked attendees to structure their case studies under headings, such as: how were patients and the public involved? What were the biggest challenges you faced and how might they best be overcome?” I suspect some of the answers may be a forerunner to a pending module from Healthtalkonline that will complement their interviews uncovering patients’ experiences of PPI. In the forthcoming module, they have gathered researchers’ views of PPI, warts and all.
Back to the workshop, I was a little worried that for some attendees, bringing an example would be difficult: even though PPI has been mandated by many research funders for some time, we know that it often sits between being a bit of a mystery to being something our researchers really don’t want to think about, or don’t really know how to think about. I wasn’t sure how many would bare their souls and stories in this context to their colleagues, and was pleasantly surprised.
You can read all stories here. We have already shared these with PAIR, whose feedback highlighted the extent to which involvement and engagement are often confused. While we work hard to try and get researchers to understand the importance of PPI and how it differs from engagement (put simply, the former is about partnership in research planning and delivery, the latter about telling people what you do) we are also clear about the importance of engagement as a step to involvement (as set out in our strategy) as well as vice versa.
At the start of this blog I dared hope that our current activities might herald some sort of sea change in PPI. As I head towards an open air summer trial by Shakespeare (I have confessed to my views about this before) I have been looking again at The Tempest. I didn’t know until yesterday that this is credited with being the origin of the phrase “sea change,” in the song of Ariel to Ferdinand after his father’s apparent death by drowning:
“Full fathom five thy father lies,
Of his bones are coral made,
Those are pearls that were his eyes,
Nothing of him that doth fade,
But doth suffer a sea-change,
into something rich and strange.”
Hopefully we can save anyone from drowning in PPI, but I rather like the thought of it as the sea change that brings about richness. Even if it is all a little strange.