Lots of food for thought this week after a fascinating two days at the BRC Mid-term review. This event, where a panel of international experts reviewed the science and impact of the BRCs work, was designed to focus all our minds on how we can best move to, and beyond, the end of our current funding in 2017.
Each of the 14 themes submitted written accounts of their work, with theme leaders backing these up with oral presentations on the day. We heard about some truly amazing research – a couple of nuggets are the possibility of remotely monitoring patients’ health via cameras that track them via their computers while they do other things like surf the internet or skype their grandchildren. The second (in very sketchy summary) was a piece of work that showed that a diagnostic test that costs £350 was valued by patients at about 5 times more than this. If ever there were a clear illustration of what matters to patients, and where they need a voice, that is it. But of course, in the context of all the other work presented at the Review (and going on further afield), the circle to be squared is how best to heed patient push when allocating finite resources.
Seeing the breadth and depth of work being carried out across such a swathe of disease areas certainly left me with food for thought about how we choose where to focus. It would be easy to go for the common diseases and make a big impact on large numbers of people, but if you or a loved one has a very rare disease, that can leave you in a pretty lonely place.
Alongside raising lots of questions such as these, the other issues the two days left me mulling over are the extent to which patients can be involved – truly involved – in the more basic ends of science – when it’s still about test tubes and cells and molecules (it’s a perennial issue in my world), and whether or not positive discrimination for women in science (or medicine or research or indeed any other sphere) is the best way to the best outcomes.
Along with the PAIR member who kindly attended the review with me, we have submitted our observations on PPI to the review Chairman. Our main concern is that involvement – doing research in truly equal partnership with patients – still gets confused with the valuable but different pursuit of engagement – telling folk what you are doing. No two ways about it, involvement is a tougher activity to get right, in part because we are still learning what “right” means. But – and you certainly didn’t hear it here first but it bears repeating – get it right we must if increasingly cited aspirations for a truly patient-centred National Health and Research Service are to be realised.