Today I started to think about the forthcoming INVOLVE national conference. More particularly, what I want to say to this important gathering in less than a month’s time. This will be my first conference since taking over as Chair in June 2011 and, since then of course, I have also taken on the new National Director role. It is important to me that we emerge from the event not simply ready for the future but willing to think differently and boldly about our future as a movement.
At some point, if only to help poor political studies students doing dissertations, I will write a ‘day-in-the-life-piece’ about what it is like to be a ‘tsar’ as conference hosts are wont to call me nowadays. It is not a term I favour. But it’s completely excusable; relaying my full job title needs a deep breath by the person saying it as much as it does for the holder.
I think that what I have valued most thus far in wearing both ‘hats’ has been the opportunity to roam far and wide, to listen to many people and their views. I hope they continue to share as generously in the future for we can only achieve the things we want to by working collectively. For it’s down to work time now.
Top of mind today for me has been the fact that I have met many inspiring leaders in public involvement during my rounds. But that, as a community, we lack the sort of cohesive leadership and ways of working if not organisation that encourage freedom of thought and license to act. We must come together more. We must be quicker and smarter at making connections and building networks (partnerships if you prefer) from which we can all gain support and, most important of all, energy. We must respect eachother’s specialisms and look to help strengthen these in ways that are mutually beneficial rather than be tempted to replicate or re-invent. And we must together lay some real ghosts that stand in the way of progress such as defining our impact, the way we should measure our success and, dare I say it, our own behaviours at times.
‘Anon’ as the Bard would say.
Richard Smith (former editor of the BMJ) has written two phenomenally good blogs this week about stratified medicines. I mention it because he and I went to the same event at the Academy of Medical Sciences last week. I should also add that he was there all the time while I could only pop over for a few hours. But I am glad he self-confessedly found the subject matter and its ramifications as mind-boggling as I did (not that you would know it from his blogs). The very term ‘stratified’ does not lend itself to public understanding that’s for sure. Nor are the alternatives that great. I myself came away pondering whether ‘iMedicine’ might be a good alternative given we are so used to the concept of ‘i’ meaning your own personalised service of whatever description. But there seems to be a health ‘app’ with this name. So, back to the drawing board for me. In the meantime the science marches on. And this document from the Technology Strategy Board gives a sense of the overall UK approach.
Suffice to say that public engagement activity around ‘stratified medicines’ is in its infancy. I found a few papers which look at small samples of people and are perhaps indicative of wider concerns about discrimintion or privacy or, indeed, of favourable views about the benefits and the importance of good information and support to patients. But we just don’t know what people think. However, all is not lost. The latest issue of the ‘Sciencewise’ newsletter has an articile about stratified medicines (including a good definition) with the news that they are about to put out a tender for a proper public engagement exercise. Excellent news. You might also be interested in this piece from last month about a new EU lobby group on the issues.
Finally a plug! Just mentioning this because I might go myself but the NIHR Imperial Biomedical Research Centre in London is holding a showcase for the public on 1st November. Details here.