National Cancer Research Institute

1. ‘The dog ate my whole doctor’s surgery.’ Yep, it’s those dastardly GPs again. Ever since the weekend news that many cancers are first diagnosed in A&E we’ve seen the excuses just roll off their collective tongues. So much so you’d think they’d said them before. We’re underfunded, underpaid. stunned by so much change, and very, very, very, very busy. Expect more of the same in response to the Care Quality Commission report this evening. Most definitely DOWN.

2. ‘The NHS is listing.’ So the HSJ published its annual top 100 superheroes in healthcare list today. All puerile nonsense really. The HSJ even hosts a party for them all. Given that the first individual with patient credentials appears at #37 on this year’s list, I suspect the only patients and members of the public at the party will be serving canapés. And we wonder what’s wrong with the NHS. DOWN.

3. ‘Research is the new dating.’ The Health Research Authority (HRA) has announced a consultation on good practice in approaching people to take part in research. Good move I say. Too many ethics committees would rather we recruit people to research using methods similar to MI6 at Oxford or Cambridge in the 50s. More on this later but they are most definitely UP UP UP!

4. ‘Cut-price PPI.’ With the January sales just a few weeks away it’s heartening to hear that the National Cancer Research Institute (NCRI) is keen to make an impression. But cutting the reimbursement of patient and public involvement colleagues from £150 a day to £80 overnight and without consultation is just a little bit crass. Remind me, what does the campaign slogan say: ‘no research happens without participation.’ NCRI is DOWN in my book. Sorry.

5. ‘Results? Don’t worry your little head about that!’ So we learnt this week that 4 out of 5 participants in research would like to be informed about the results of studies they have taken part in. But only 1 in 5 get them. Shame. Research is for life not just for Christmas. But why not take the opportunity of the festive season to sign-up to #AllTrials who are definitely UP.

6. ‘Exeter is the new Bonsai beach of PPI.’ Congrats to PenCLAHRC on what I heard was a fantastic PPI conference a few weeks ago. I say ‘heard’ because I wasn’t invited. Not that I bear a grudge or anything. Now, where’s NIHR’s number…..? UP, I say, UP

7. ‘Researchers like their toys.’ How dare we question the basis and funding for the 6,234th study into whether music and singing in a care home leads to happier residents? Of course it bloody does! Similarly I have yet to fully understand why the ESRC thinks it is a good use of public money to spend £425k to study how children play with Action Man. They could just have called on my house and spent Sunday afternoon with my sons – for the price of a cucumber sandwich or two! The ESRC is DOWN.

8. ‘Dementia wasn’t cured in a summit.’ Let me be clear, the G8 Dementia Summit today is a good thing in my view. But whether we’ve seen Jeremy Hunt march us all up the mountain and then back down again like the Grand Old Duke of York remains to be seen. In the meantime put your trust in the ‘10,000’ and many more people with dementia and their carers who will get us there through their involvement. For that reason, and that reason alone, UP!

9. ‘Think AHSN, think Secret Santa.’ If you had been at the AMRC AGM two weeks ago you’d have thought Christmas had come early in research with the advent of AHSNs. They are going to solve all our problems.

Up and down the country the same encounter is taking place in dark alleys between researchers and policymakers: ‘My mate Nicholson tells me (sniff) you’ve got a problem with your test tubes and stuff. Well, I know just the bloke to help you, works for one of ’em AHSNs. Goes by the name of…’

But let’s get real. With less money and little consistency in approach, working with AHSNs is going to be more like the office secret Santa.  What that means, my hardy patient and public colleagues, is that your particular Secret Santa may have forgotten all about you I am afraid. So, AHSNs are neither UP or DOWN my Christmas chimney. The jury is most surely out.

10. ‘You know who you are.’ The term ‘patient leader’ is being purloined and skewered left right and centre.   Beware management consultants and so-called ‘public engagement experts’ on the make especially. Patient leaders, rise above it I say! We’ve seen it all before. We are all on the UP.

The results of the annual cancer patient experience survey are out today.

For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting.  As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed with them.  You can find the results of these particular questions on p57 of the report linked-to above.

The overall finding is that 33% of cancer patients said that taking part in research had been discussed with them but 67% of patients said it had not.  There are considerable variations according to tumour type with urological cancer coming out worst.  By Trusts the percentage of patients who were asked about research ranges from 14% to 62%.  Whatever way you cut it – by tumour type or geographical area – the majority of people who were asked were glad that the subject had been broached.

In a field which has built a significant reputation for improving patient access to research – thanks to the National Cancer Research Institute (NCRI) and the National Cancer Research Network (NCRN) – these figures show the work still to be done to bring research to the fore of the conversation that cancer patients have with their doctor. I would suspect that other conditions have a steeper hill to climb in comparison.

There is no magic bullet to improving access.  The survey highlights the future importance of things like the NHS Choice Framework and the strengthening of patient rights through the NHS constitution in empowering patients to ask the question. But a lot will also rest on ensuring NHS Trusts prioritise the access agend; that they make it their job to raise awareness of their research activity and the importance of patient participation in it.

This week, through NIHR CRN CC, we kicked off a piece of work – Involvement4Access – to bring together patients and support them as leaders within Trusts environment to improve patient access to research.  On Wednesday I had the opportunity to attend a Royal College of Paediatrics and Child Health (RCPCH) workshop about research where parents and young people reported very real differences in the willingness of hospitals to advertise research openly on wards, receptions areas etc.  The reasons put forward by hospitals for not being more open about research are often misconceived if not plain bunkum.

But improving access will also require patient groups and charities to do more to support the patient voice in lobbying Trusts, health professionals and others to change their approach.  There is much in this report and in the recent NIHR league tables of research activity to aid this work.  Yet patients need the right tools and information that they and their families can use confidently in order to broker the conversation with their GP or consultant. They also need to hear more from their representative bodies about how they should consider taking part in research as part of their overall treatment.

At the same time, the survey findings about people who were not asked about research on whether they would like to have been, highlights the fact that to participate or not is a  ‘personal choice’ which must be respected.  53% of people said they would like to have been, 47% said they would not have liked a discussion.  Insight into the patient experience from a research perspective – at what point in their care and treatment should the conversation take place, with whom and how – will increasingly be important.  That’s why today’s survey must be repeated but also used as a prompt for further inquiry.  It should also be repeated in other disease and conditions areas as well.

At the end of the day, providing better patient access to research is about improving patient choice, leadership, insight and voice.

The National Cancer Research Institute (NCRI) is on a recruitment drive for consumers (patients, carers, relatives and members of the public affected by cancer) to join one of their Clinical Studies Groups (CSGs).

These Groups are pivotal in driving new ideas and setting the agenda for cancer research so a patient voice is essential.  There are ten Groups covering different cancers looking for new recruits and if you click on the advert beside this text you can find out more.