Research Matters: Get Involved, Make a Difference
Public engagement in research conference
23 May 2018
This event took place in the Great Hall at St. Bart’s and I met Jane who was assisting at the sign-in desk after she had set out various promotional materials including one for the crowdfunding site for the Beetroot Study that we had just received details of that day.
I also met up with three other fellow William Harvey Clinical Research Centre patients volunteers before the programme began.
Professor Rupert Pearse gave an introduction and a warm welcome to the event.
The first presentation was by Bart’s Young Persons Advisory Group (BYPRAG) children’s health research team and some of their advisory group members who performed a short piece depicting their experiences of taking part in a clinical trial and what led them to form the advisory group. I found this performance charming and informative. It was slightly spoilt for me as I could not hear some of it from the back of the room where I was sitting. It was a shame because the performance was otherwise very good. I must confess that I was made to feel very old – the Doctor was a consultant and he looked so incredibly young. I am very jealous.
Dr Gillian Hood gave a most interesting presentation about the Diabetes Research Lay Panel and her work with them. I was particularly interested because I signed up a couple of weeks ago to attend her upcoming Let’s Focus on Diabetes event.
The next talk was given on Public Involvement and Emergency Department work by Imogen Skene and Olivia Boulton, Emergency Department Research Nurses. We heard about some of the research taking place across the Barts Health Trust. David Martin, advisory panel member told us how he had been a patient treated in ER and grateful he was for all the care he had received. He was moved to help to repay and put something back into the system which had helped him. Good for him, I say. This is something I can identify with.
The final presentation, that was of particular interest to me was about TrialsConnect given by Dr David Collier and Paul Bowers Isaacson who detailed their work with TrialsConnect aided by some professional looking graphics. It was pleasing to see that the IT was perfect for this presentation and contained some professional looking graphics.
Between them David and Paul detailed the work of TrialsConnect and the impact their work with patients had, including activities such as attending staff meetings at Parexel and Novartis, two large international research companies and presenting patient stories.
This seemed to excite a buzz of interest and it seemed to me that there were a lot of people present who were only now trying to emulate what TrialsConnect had achieved some time ago.
I spoke to one woman who was trying to organise her patient volunteers and wanted to get something going along the lines of what we were doing on patient training and how to attract press interest…
We then had table discussions and gave feedback followed by Neeta Patel talking about Patient Research Champions. This was very interesting but on reading the description of what one of these was it struck me that this was exactly what I did for William Harvey and David Collier had achieved this with other patients a number of years ago. Way to go David, a man before his time!
I found the evening enjoyable and interesting and I believe that the Trials Connect presentation had a big impact on the audience and it wouldn’t surprise me if more units tried to come up with something similar.