I once went to Las Vegas. It is a long, long time ago now. But I remember it being a very strange experience.

Everything is turned in on itself. Away from the inhospitable heat of the sidewalks. Or, more accurately, everything – from hotel bedrooms to burger joints and cocktail bars – is turned to face into hangar-sized casinos which are open 24/7. Because if you’re in the Las Vegas then all you want to do is gamble, right?

For most – whose resources are frankly limited – this gambling takes the form of slot machines. These are glorified versions of what you’ll find at English seaside amusement arcades. Lights flash everywhere. The air is filled with bleeps and the sound of coins falling into slots. But if you’re rich enough then you can break away from this melee and join exclusive clubs, playing poker and other high stakes games behind closed doors.

I sometimes wonder whether science funding is taking on the airs of a poker game m. There’s our public funders – Government, publicly funded charities – spending their money while everyone looks over their shoulder. Even industry to an increasing extent. And then there’s the philanthropists: Gates and Zuckerberg being the most obvious examples and spending collectively tens of £billions. But with many others joining them – wanting to do good no doubt but in their own inimitable way and with the sort of money that really can move mountains.

And to be honest I really can’t decide whether this is a good thing or a bad thing. On the one hand it means lots more money being spent on research which is great, right? But, on the other, there’s no guarantee it’s being spent in the public interest is there? Because what people forget is that while public funders when invited around any table must always show their hand, philanthropists are under no obligation to reveal any of their cards whatsoever. More over, by the time we get to the sorts of eye-watering sums coming into play with philanthropists most of our charities are well out of the game.

Some time ago I wrote an open letter to Zuckerberg (the founder of Zuckerberg) on this blog. This, after he’d announced his flight of fancy donation to research to cure everything. I asked him to involve people in deciding how it was spent. I never got a reply. Which surprised me because his data geeks probably knew I was writing it before I did. Now I suspect he’s too busy being fined for me to ever have a chance of a reply.

Fact is we have no way of telling whether it’s all in the public interest or not – other than the good news stories they tell us and themselves. And I worry that so entangled are we all becoming across research that we may not ‘call out’ the philanthropist who is not acting with the public interest in mind. Or not until there was pressure from the media and the public which is never a good position to get into. I hope I’m wrong but it is a worry.

The other issues I ponder and wonder whether to worry about are more insidious things. First, it’s the degree to which funders seem increasingly intoxicated with risk. And the bigger the risk the better. It’s as if they are saying what’s gone before is done and dusted. We’ve exhausted what’s there and the returns are too small for all the effort. Sounds like the closure of the coal mines in the 1980s.

But we know that there has been terrible waste in science already. Also that one of the reasons for this is that it has not focused on the needs and priorities of patients and carers and the public. Sometimes just sometimes the lurch towards risk feels like the science funding equivalent of chasing the dragon in search of ever greater highs. Boring can be good you know. It can be very very good from a patient perspective if it means attention to pain, fatigue and de-medicalising health.

I also wonder whether a double standard is at play here.

When the Wellcome Trust trumpeted it’s new Leap Fund yesterday with £250M downloaded from its reserves plus a little help from venture capitalists and other risk-takers the announcement was crafted around all the usual messages on innovation, new ideas etc etc. But if you strip all this away it’s really about leaps of faith. And if that is the case, why do funders increasingly resist adequately funding public engagement and involvement on the basis that, well, er, they are leaps of faith. That the evidence base is minimal and we just can’t afford such a punt? Mmmmm. I think that’s crass don’t you?

It’s probably worth pointing out that however good Wellcome Trust’s public engagement programme is – and it is very, very good – as a private charitable trust it is under no obligation to, nor does it, involve the public in setting its research priorities or making funding decisions to any great extent.

I’m sure my fears are unfounded. But if they are not, what to do about it is a conundrum. Can we – patients, carers and the public – ever be the dealer? Probably not. Can we set the rules of the game? Possibly.

It would be good to see philanthropists strongly encouraged to sign up to bodies like AMRC which at least ensure some quality control. Perhaps we could claim PPI refunds on the science that clearly has wasted good money? Or just for once ensure that all research funding decisions – however risky – is informed by patient experience. I’m looking forward to someone setting up the ‘Leap of Faith’ fund for publicly chosen science. Now that would be good,

For, just remember, as the tax-payer pulling on that ‘one-armed’ bandit every day, one way or other you’re going to be footing the bill for an increasingly high stakes game.

There, I’ve shown my hand as ever.

(Warning several spoiler alerts!)

If the sight and sound of research institutions and organisations bellowing about their impact on life and the universe has a familiar ring to it, you’d be right.

The reference point you are looking for – but have understandably mislaid – is ‘Monsters Inc.’ The brilliant 2001 Pixar animation in which a motley crew of loveable and not so loveable monsters seek to outdo each other in making small children scream and cry in the middle of the night. As you’ll remember, their shrieks of terror are captured and turned into electricity to power Monster City.

Yes, the research community is doing its VERY best to tell us VERY loudly about the HUGE/MASSIVE/INCREDIBLE difference it is making to you, me and the world. And this cacophony of noise is likely to reach ‘11’ on the volume button as we head towards the Research Excellence Framework (REF) in 2021. The REF is the name given to the exercise by which the UK decides which institutions are doing the best research. Since 2014 it has included a component which assesses institutions for the impact their research has had on society.

That institutions should care about the difference they are making to society is a good thing. That they should be assessed as to whether this impact is real (or imagined by the Vice Chancellor) is also a good thing. After all, if you roll back the years to before the 2014 REF when ‘impact’ was first assessed, much of the research community was kicking and screaming about the mere notion. So loudly in fact that we could have solved the world’s energy problems for at least a month. I really do wish it was 50% of the REF instead of the current 25% just to see what would happen.

Now that ‘impact’ is part of the laboratory furniture so to speak, thought is turning to how the devil we should define and measure it? What does it look like? Would we know it if we walked into it? How can we reduce the fear?

Last week I attended a very good event about impact hosted by the NIHR Oxford Biomedical Research Centre and the Cochrane Collaboration (#OxfordImpact). Then Chaired the NIHR working group on public involvement impact. Each meeting in its own ways was trying to get to grips with the issues.

The debate about impact has given me more highs and lows in the last 12 months than watching the England football team over the last 50 years. One minute I’m running round my kitchen shouting ‘I’ve solved it.’ The next minute I’m sobbing at my desk, inconsolable amidst the piles of screwed up bits of paper pleading ‘why, why, why?’ The point being – and here’s my lightbulb moment of the last week (spoiler moment, I am actually quite dim) – this is an issue which has no solution. Rather it’s a question that can only be answered by asking lots of other questions. Which lead to further questions etc. And so slowly we will form a picture. But it will never be perfect I suspect. Where would the fun be in that?

I have distant memories of a similar ‘impact’ frenzy gripping the charity sector many moons ago. It sparked very similar behaviour. Screaming. Hand-wringing. People with ‘Impact’ in their job title (some of my best friends are impact experts). Overpaid consultants. An industry of…well, an industry. Frameworks you wouldn’t hang your washing on. Etc etc. And eventually it has all settled somewhere sensible where people do their best to say what difference they have made. A place where there is more art than science in all truth.

I suppose where I am for the moment is believing passionately that research impact is in the eye of the beholder. And that, in respect of health research, no conversation about impact can get very far without understanding how our publics see it. What difference do they think health research should be making to them and their family and neighbours? Our public, our citizens, can provide the ‘moral narrative’ as it was called in Oxford that can get this debate off on the right foot. Hence the NIHR impact working group will try to tackle this first. With the help of many others.

If you don’t believe me then just watch Monsters Inc. As you’ll know the story ends with our heroic monsters Sullivan and Mike Wazowski exposing the corrupt factory managers for what they are and discovering that its children’s laughter that creates the greatest energy. And they all live happily ever after.

There’s really no need to make us scream.

Have a great evening.

I was delighted to see that Billy Caldwell had been discharged from hospital yesterday. This, after the Home Office granted a 20-day licence for the cannabis oil that alleviates the seizures associated with his epilepsy.

The substance had been confiscated on his arrival in the UK from Canada with his mother, Charlotte, last week. Shortly after which he was admitted to hospital in a life-threatening condition following a series of seizures.  The outrage has been justified. The decision taken yesterday, the right one.

We can only hope the license is more than a temporary reprieve. That the Government has at last managed to untie the knot it has got itself into. Yesterday there seemed conflicting messages from within Whitehall as to what will happen next. But we do know that a committee of expert clinicians is to be set up to look at ‘individual cases’ and that this will be chaired by the Chief Medical Officer, Professor Dame Sally Davies.

Today’s media are full of opinion and analysis about cannabis oil. Some have chosen to open up the discussion even wider and look at the legalisation of cannabis.  Inevitably others are wading in. The unfolding debate is perhaps shrouding some deeper questions that Billy’s case raises, not about cannabis but about patient experience.

The first time Billy’s plight came to my attention was hearing Charlotte being interviewed on BBC Radio 4’s Today Programme. She was up against a very senior academic whose name escapes me I am afraid. The two-way interview concluded with the latter commenting that – and I paraphrase – ‘ we have to look at the evidence and can’t do things on the basis of anecdote.’

This turn of phrase was interesting to me. For me, anecdotes are stories often told in the third person and with some implied distance from the subject or event. Charlotte and Billy’s story was not an anecdote. They were relaying their lived – and current – experience. The professor’s statement seemed an unnecessary public dismissal. I thought at the time that overcoming this perception would be the biggest hurdle for the family.

Yet this frequent rubbishing – and it is rubbishing – of patient experience as being without value, of not being believable and of relegating it to the bottom of the ‘evidence’ pile is something that will not be new to many patients.  Not only does it put patients and their families at an immediate disadvantage in their own care, it also seems an entirely unambitious and inflexible way for health and research to look at the world: who knows what promising lines of inquiry might be raised by Billy’s experiences? Shouldn’t we be embracing it rather than decrying it?

The other interesting observation about how this whole episode has unfolded – apart from the usual accusations about bureaucracy and the shoddy state of our Home Office – is that it shows how inept the system is at responding to and managing patient expectations. Having spent decades creating a culture of expectation around medicines and treatments – cure versus care – health organisations, research institutions and regulators have thought little about what this might mean for them.  They respond in the only way they know – according to rules and regulations. Rather than operating to any discernible values or principles which might guide more effective and timely decision-making.

(As an aside I wonder whether we should be investing more money in exploring public expectations of health and research rather than the typical ‘public understanding’ agenda which has always been a loaded question in my mind)

The final point is that, were we to have such principles then ‘openness’ would surely be fundamental to how the system operated: transparency over how decisions are reached, who is responsible, what information is used to reach them? If patients are to be able to contest or challenge decisions then this sort of knowledge seems essential. Fighting the smoke and mirrors that are usually put in people’s way is exhausting if not insulting.

So the new expert committee must think about how it takes on board patient experience alongside the clinical evidence, how it will involve relevant parties and communicate its decisions. But it can only ever be a short-term fix for some fundamental issues that need addressing.

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the sample now rising to nearly 5000 people, it’s become an extremely credible exercise.

The high positive ratings on overall experience (80+ %) are consistent with every survey I’ve seen in this field. But the report includes a neat synopsis of the recurrent themes in the data about what’s high on the priority list for patients including: motivation; research staff (constantly over-looked in public engagement efforts around health research); time; information; access issues. It will be interesting to see if and how these are highlighted in the PRIORITY Priority Setting Partnership looking at retention issues in trials.

What’s really clever about the report is that the authors – Mana Golsorkhi and Roger Steel – have then taken the findings and translated them into a series of recommendations for how issues might be addressed, charting these against different stages in the research pathway and then which organisations have responsibility for making it happen. In such a way they have shone a light on some of the weaker areas where further work is needed.

They also make some more pointed recommendations for each of the main issues identified above. I was taken with the proposal that each site (hospital, surgery etc). taking part in a clinical trial should carry out an ‘access audit’ which takes into account physical access, parking, time to travel etc. It’s a good idea. But i think it could be widened to a more general audit that is integral to assessing site feasibility.

Personally I would like to see all Clinical Trials Units and trial sites have Standard Operating Procedures (SOP) to cover public involvement and patient experience.

Great report. A good way to end the week.

I have written a fair bit about Academic Health Sciences Networks (AHSNs) in the past. Not always favourably I’ll admit. But that was then and this is now.

I am pleased to report that, as of May, the 15 AHSN have been re-licensed/re-designated/re-booted (select as necessary) for another five years with NHS Chief Executive, Simon Stevens, describing them as a catalyst for change in the innovation landscape.

They have also produced a rather nifty booklet entitled ‘Guide to the AHSN Network 2018: Our collective impact and future plans.’ It was launched at the NHS Confederation today and includes some great examples of innovation that AHSNs have had a role in developing. From medicines safety to cerebral palsy. I encourage you to take a look.

I was pleased to see Mike Hannay, Chair of the AHSN Network and managing director of the East Midlands AHSN, use his blog on the NHS Confederation website today to call out the important role of public involvement and engagement in this success to date. Mike Hannay describes this as one of the ‘untold stories’ and I would agree.

The role of public involvement and engagement in the AHSNs continues to be under-stated. Individually and collectively they have done some great work. This booklet ‘Exploring Patient and Public Involvement in a Digital Age’ is an exemplar.  Where there has been a lack of definition it is perhaps only natural given their stage of development. But with some careful thought they could be the cutting edge of public involvement in some key areas of weakness for our community such as innovation adoption.  The sorts of areas which would enhance the UK’s attractiveness on the global stage.

So the re-licensing gives them an opportunity to work with patients, carers and the public and think creatively and ambitiously about the future, to chart  in coherent terms the role that involvement and engagement will have. Key criteria for success will include: clarity of mission, strong leadership from top to bottom, appropriate resourcing including people, the setting of clear expectations with partners and a willingness to partner with patient organisations locally and nationally.

I understand that we will hear more about the AHSNs future programme and plans over the summer. Let’s hope the next chapter is an even better one.

A dear schoolfriend of mine, Sara, will be laid to rest today.

We found each other on Facebook three years ago after a 30 year hiatus. I enjoyed our mutual ‘likes’ of one another’s quirky musings, the various photographs of holidays and birthdays, and the occasional sharing of news about our respective families.  I had forgotten how funny she was. Our re-connection was a small happening. But it was one that brought great pleasure to me.

So I was touched that Sara’s husband included me in a message to friends and family describing her last days with her family. It was beautifully written. Warm, loving, peaceful. It sounded as though the hospice that Sara was cared in had been wonderful with both her and her family.

Naturally, I have thought about this a fair bit in the last ten days. These things do make you contemplative. Just for a while it feels as though the moorings that tie you to the shore have become a little bit looser. Plus there is much political debate about death and dying at the moment isn’t there?

If truth be told I don’t feel ready to step into that arena. Not today anyway. But I do believe in choice. That the respect and recognition of what might seem to you and I small things has great significance. And I know that many people are denied these life-affirming choices in their final months and weeks. Choices that would make life more comfortable for them and less distressing for their loved-ones. This is one of the many reports written on the matter by the excellent Marie Cure charity which is trying to change things in the favour of people with a terminal illness.

More research is desperately needed and I thought that you may be interested to read the results of this National Institute for Health Research (NIHR) study which came out today. It shows people in the North get the least amount of end-of-life hospice care (35 days) compared to people in the South (55 days).  The principal reason would seem to be that people are referred too late by GPs and other health professionals. Here’s the BBC report on the study.  And if you want to follow progress with another NIHR funded study in the field then please do follow the Optimum Hospice at Home project on Twitter at #opelstudy.

Elsewhere I am delighted that the Academy of Medical Sciences is tentatively turning its mind to the subject of dying.  It has announced that it will be running a public engagement project this year which will allow people to explore their attitudes to death and dying. It’s only just got started so if you want to know more or feel you have something to contribute, here’s a news piece about it with the Academy’s contact details. 

This morning I wondered whether it was appropriate or not for me to write a blog based around Sara’s untimely death. But then I remembered something she wrote on Facebook a little while ago. She wrote ‘I seem to remember you always were a bit of a firebrand.’ And I can see her now, as a young girl, raising her eyebrows and smiling as she said it. She would have expected no less of me.

I know, me(!), a firebrand. Would you believe it?

Farewell Sara.

It doesn’t matter where you are in the world patients and carers have the same questions about research.

This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting consumers (as they tend to be called here) – people with dementia and carers – and hearing their voices throughout the conference proceedings.

Yesterday I sat on a panel answering audience questions about the translation of research into practice. It’s a big issue in research generally. It’s a bugbear for patients, and carers – taxpayers – wherever I go. ‘Why don’t you do more to make sure that research findings are implemented and adopted?’ they ask. And well they might.

It just so happens that the National Institute for Health Research (NIHR) has announced an open competition to run what are being called ‘Applied Research Collaborations’ (NIHR ARCs) ‘for applied health and care research and to support implementation of research into practice, making tangible improvements for patients, the public and to health and care services.’ 

ARCs will follow on from where the current Collaborations for Applied Health Research and Care (CLAHRCs) leave off towards the end of 2019. They are good news from a public perspective ensuring a continued focus on implementation.

As I have  written before on this blog I have always been a big fan of the CLAHRCs and of the public involvement teams and communities that have coalesced around them. The public involvement work they have done since their inception as pilot organisations in 2008 has been of national if not international standing. Some of the innovations that have come out of them are exemplars of public involvement generally.

So I am delighted that the NIHR commitment to ARCs meants continuity of focus on the important theme of implementation. But what I am most pleased about is that the specification for the new the ARCs also embraces  the learning and priorities for patient and public involvement to emerge from the CLAHRC experience, the ‘Going the Extra Mile’ strategic review and NIHR wider strategy refresh. An increased focus on: diversity and inclusion; community-led research and new methods. As well as aligning things with the new PPI standards.

The following Q&A from the official documentation highlights the key differences between ARCs and CLAHRCs in terms of public involvement:

………The requirement to provide a strategy for public involvement,
engagement and participation remains unchanged from the NIHR
CLAHRC and other NIHR infrastructure schemes.

What’s different?
For NIHR ARCs, there is a greater emphasis on ‘community’ to ensure
that their plans reflect the diversity of the local population, foster
community-led approaches to research, as well as developing new
methods and approaches to public and community involvement,
engagement and participation. NIHR ARCs will also be expected to
consider the six national standards for public involvement in research,
which were published in 2018…….

 

These are important strategic signals which the public involvement community needs to embrace as opportunities to take things to a new level; as a chance to bring new thinking and approaches to bear upon some perennial issues.