There’s nothing like writing a phrase such as “immediate next step”, as I did in my last blog, for encouraging action.
This rash promise was referring to plans that have been bubbling away for a while to set up a website with and for patients, enabling them to find opportunities for research involvement across the Thames Valley. The site will be a “one-stop shop” for patients who want to get involved in deciding what, and how, research is carried out, as well as having links to trials and studies. There is a national site with broadly similar aims at www.peopleinresearch.org. We are in touch with them and they like our ideas.
We discussed this in the first meeting of our Patients Active in Research (PAIR) group, and now have a small subgroup keen to work with us to take the project forward. That “working with” really matters: I have a very clear idea of what would make a fabulous site, appealing to patients across the region with an earth-shattering impact on our ability to gather folk into the fold. But my very clear idea might not do it for others, and that’s why we are going to do it with them.
Over recent months, we have been busy surveying our research partners to find out what they are up to in terms of patient and public involvement (PPI), gathering the sort of content that we want to “advertise” on the site to patients. In parallel, we are working on a host of technical aspects to make the site as useful and pleasant to use as possible, and have come up with a very dull working title; “Patients in Research in the Thames Valley.” I am determined that not only will we find a better one, but we will make the site an interesting place to browse and an acronym-free zone.
With all this background activity, and until recently no patients to guide us, I have worried about boundaries. We know that we want the site to help us find patients – and patients to find us – if they want to get involved in research planning, design and so on. This is what I tend to think of as “pure PPI”, but it also always seemed wise that the site would have, as a subsidiary function, links to trials and studies in which patients can participate.
But as ideas for the site start to stray from the world of “pure PPI into the territory of research participation, so the purist in me starts to worry. Is the job getting too big? Am I encroaching on other people’s territory? But a recent clarion call from the National Director for Public Participation and Engagement in Research has made me feel much more relaxed about the whole thing. In his blog, Simon Denegri set out his five priorities for local PPI, of which one was in part “Let’s not focus on the distinctions between involvement, engagement and participation but celebrate the commonality and how it can bring us together”.
As a scientist (albeit many moons ago) with a tendency towards pedantry about language, I can get very hung up on definitions. But reading Simon’s words has made me realise that here we have a chance to do something big and bold and maybe at times a little bit messy round the edges.
Whether our website involves, engages or enables participation, it doesn’t really matter, as long as it has partnership working and patient benefit at its heart. And it will, because it will have patients at its heart and – if you can help us find one – a much better title.
If you can suggest a title for the new website, or would like to help develop or write for it, please contact Sophie on firstname.lastname@example.org