patient and public involvement

Happy International Clinical Trials Day (ICTD) 2015 everyone!

Today over 100 NHS Trusts will be taking part in NIHR’s ‘OK to ask’ campaign aimed at raising public awareness of clinical research and encouraging patients to take part in clinical studies.  There will be displays in hospital receptions and staff canteens, mock trials with chocolate (yummy!), Open Days and talks.

But this year the #NIHRoktoask campaign has also taken to the streets.  There’s a ‘Research Bus’ touring town centres in Gloucestershire, a ‘Research Trail’ for young people at Great Ormond Street, town halls being taken over, ‘flash mobs’ in city centres, and information stalls outside  supermarkets (with even more chocolate I hope).

Social media has been particularly active this year.  If you have a spare moment this lunchtime (Wednesday 20 May) I hope you will take part in or listen to the Medical Research Council Clinical Trials Unit (MRC CTU) ‘tweetchat:’ ‘Why do clinical trials matter?’, with #trialsmatter as the hashtag.  They have four panellists who will be answering questions, and the Q&A will take place from 1-1.45 BST on Wednesday 20th May.  More details here.

You may also like to read the transcripts of the other twitter conversations NIHR has hosted on (just click on the relevant disease): cancer, diabetes, dementia, mental health, and stroke.

A quiet revolution is taking place.  Now in its third year the #NIHRoktoask campaign is a movement from the ground up.  It is driven by the passion and commitment of patients, researchers, nurses, doctors and managers working together to share the message that clinical research is vital, that it needs patients and healthy volunteers to come forward if we are to find new and better treatments and therapies. And they should be encouraged by what other patients tell us.

Our UK Clinical Research Facilities (UKCRF) Network will today be displaying a poster in their unit which shows the results of a survey they have done with over 700 patients about their experiences of research.  99% said that information was explained clearly to them on their visit – often with the help of patient and public volunteers, 97% said they would recommend taking part in research to their friends and family.   You can find the survey results here.

A few mornings ago I was walking down a London Street and passed one of those electric cars having its battery charged.  With its plug and long, dangly wire it seemed rather incongruous.  The scene would have been inconceivable ten years ago.  But not now. In fact, we might all be fighting over ‘car chargers’ rather than parking spaces before not too long.

In a similar vein, even five years ago this sort of activism about clinical research would have seemed impossible – desirable but impossible. But now it’s here.  And it’s where it should be – with and alongside the communities it seeks to serve.

Have a great day.

Patient and public advocates in health and social care would make bloody good pilots.

Year after year we ask them to help successfully land projects and initiatives in ‘fuel critical’ situations. They are having to carry more, and further. But for how much longer before someone has to declare a real fuel emergency? And a serious one at that.

When did we begin to run public involvement in health on principles and values more suited to Ryanair?

Funding has been a perennial problem in public involvement and continues to be so. It is the proverbial elephant in the room – or should I say jumbo in the control tower – and we need to talk about it. In an adult way.

Looking at public involvement in research we have a rather curious state of affairs occurring. On the one hand there are institutions and projects allocating around 10% of their budget to public involvement activities. That would seem a good benchmark. On the other, researchers are generally under-estimating and therefore undervaluing costs. Generally, because public involvement is not appearing as a budget line in people’s business plans it is extremely vulnerable. Sometimes it is hidden in the communications budget and we all knows what that means.

Where discussion of these matters does occur I find that patients and the public have more common sense than anyone else around the table. After all, unlike the Prof or consultant who drove to the meeting in their Lexus, they had to think hard about how they would meet the costs of the bus fare. They know money is tight. They do not expect riches. But nor should they be asked to commit to projects running on vapour.

So what to do? I think there are a number of ways in which we might tackle it together. In research at least.

It would be good to know what is being spent, where and how. I suspect it’s possibly more than we think, probably less than is needed and likely not in the right places. Knowing this is helpful if we want to be more strategic about how we fund public involvement in the future.

All researchers submitting research applications should be using the new INVOLVE costing template for public involvement. And reviewers should be looking to see that they have.

Leaders have a responsibility to find and allocate resources appropriately. Good leaders recognise that the patient voice is strategically important. So we must constantly challenge the notions on which their approach to its funding is based. Does it hold water?

As lay members of projects we should be asking more questions about how the budget is being spent. And helping to find ways of spending money better.

And we must resist the temptation for organisations to dress up communications or marketing as public involvement. Public involvement is about design and effectiveness and quality. Not PR.

I don’t know about you but I’d quite like our health service to be the flag carrier for public involvement in society.

Just in case you had missed it, it’s all about patient experience from now on!  And a good thing too.

Or, at the very least, it seems the intention is to ask people more questions about their experience.  A lot more questions in fact.

In the new world, I wonder, will we be met by NHS ‘chuggers’ as we walk through the doors of our local hospital for an appointment?  Will there be follow-up calls?  What happens if we refuse? Do we have the right to remain silent?  Do we get the right to one telephone call before questioning?  A friend perhaps? I need to know.  I’m not good under good doctor, bad doctor questioning.  Although I do respond well to plea bargaining about diet etc.

So, you might want to get your question in to the expert questioners first, by taking part in The Guardian’s live Q&A at lunchtime this Friday 15th June about patient experience and feedback.  I tend to agree with Dick Vinegar’s take in The Guardian last month that patient feedback is ‘a blunt instrument that needs sharpening.’

Returning to the broader point about patient experience, recent ponderings on the subject led me today to the Cleveland Plain Dealer in Ohio, USA.  Cleveland is a very rainy city if I recall from my brief trip there years ago.  But this highly readable article felt like the sun coming out.  Entitled ‘Art of patient satisfaction meets the science of medicine’ it shines a light on what putting patient experience at the heart of a health organisation’s culture really means in practice.

The organisation concerned is the Cleveland Clinic and its turnaround story has also been featured recently in the Harvard Business Reviewyou can read it here for $6.95!  In sum, questions are a good starting point..but it’s what you do with the answers that really matters.  Obvious point but patient experience does suggest it needs repeating time and time again.

Here’s some more on the Cleveland Clinic’s approach to patient experience. And this article – looking at the drive to appoint Chief Patient Experience Officers (CPEO) in New York hospitals in the same way that the Cleveland Clinic did – just shows how quickly these things become an industry in their own right.  Is that good or bad?  Bad if the industry loses sight of its mission.

Nonetheless I quite like the idea of being questioned by the CPEO next time I’m in Cleveland.  Sort of feel they should be accompanied by R2D2 don’t you?


The Government last week launched a public consultation seeking views on the membership of Healthwatch England.

Healthwatch England will be the ‘consumers champion’ under the NHS reforms. It will be what they call a ‘statutory committee’ of the Care Quality Commission (CQC) and is expected to be up and running by the autumn. Many, including National Voices, have argued that it should be an independent body.

In the consultation,the Department of Health asks for views on how large the Healthwatch committee should be, how people should be appointed to it(including whether they should be elected), and what sort of experience they should have. It says that they should have a background in active patient and public involvement.

The document is quite helpful in describing where Healthwatch fits into the overall scheme of things. There will be local Healthwatches as well. And a key issue will be ensuring that these local bodies form a strong network. Also, that they have a strong link to the England committee. We have singularly failed to achieve this aim with previous incarnations of patient and public involvement forums, beginning with Community Health Councils in the 80/90s or their successors including ‘LINKS.’

As an aside, you might wish to read Angela Rippon’s interview in the Sunday Times today. She is now a Vice-Chair of the Patients Association (paywall).