From Simon Denegri, Chair of INVOLVE
A warm welcome to the Winter issue of the INVOLVE newsletter.
Perish the thought that you are stranded by either snowdrifts or rising waters in these first few months of the year. But if so, then I promise you there is much in this issue to occupy you until the rescuers arrive.
And we have something for all ages: from a fine article focusing on the PEOPPLE project involving older people, to Louca-Mai Brady and Sophie Newbound’s look at supporting public and patient involvement in paediatric research.
I think you will also enjoy the Diabetes Research Network (DRN) Patient and Public Involvement (PPI) Working Group’s piece on public engagement in diabetes research. Martin Lodemore and his colleagues have done so much great work in the DRN over the years and it is good to be able to open this up to a wider audience. This is complemented by by an article highlighting the benefits of involving women with gestational diabetes in research.
We naturally look back at our amazingly successful Conference in Nottingham last year with a centre-spread report and photos. I am sure none of you will ever forget Sir Iain Chalmers’ fantastic keynote speech and his impassioned plea to us to do more to stand up for patient rights in research. Some of you may already be following the campaign on the registering and reporting of clinical trials www.alltrials.net. If not, please take a look.
A few weeks ago I was looking through your responses to our Conference survey (report available shortly) and could not help but feel humbled by your positive comments. I was also encouraged by the voices urging INVOLVE to be bolder and to press on with its vital work. We have much to do, that’s for sure, but focus will be important.
Often when I do talks up and down the country people come up to me and say: “I didn’t know where to start until I came across INVOLVE’s publications and its website.” Or something along those lines anyway. So I am not surprised to hear this echoed in the Conference survey. We need to build on the great work we did on the website last year so people know we are there for them. And you can help by giving your copy of the newsletter to colleagues or emailing them the website link and asking them to sign up.
Of course, the need for help and support does not end after people take those first few tentative steps on the path to public involvement. In my experience, it is ongoing. Alison Faulkner and colleagues’ constructive article in this issue on mentoring service user researchers addresses a very specific need. But it is also an example of the growing importance of the learning and development agenda to us all.
So what better way to finish my welcome message this time than by noting that, in January, INVOLVE held a workshop with people from across the National Institute for Health Research (NIHR) to begin the work of addressing people’s public involvement learning and development needs whatever their role and experience. More on this in Coordinating Centre news.
No one should ever feel stranded in our community.