Welcome

Thanks for visiting my blog. I am Chair of INVOLVE - the UK's national advisory group on public involvement - and NIHR National Director for Public Participation and Engagement in Research. I was CEO at the Association of Medical Research Charities (AMRC) from 2006 until 2011. My full profile can be found on the 'Biography' page. The views on here are all personal ones unless otherwise stated. I hope you enjoy some of the things I write and/or find a useful link or two along the way.

Cancer research ‘sales’ to patients remain flat

Today sees the annual Cancer Patient Experience Survey published.

For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and tumour type.

The results are not that encouraging. Since the survey started including questions about research, the dial has been stuck at less than 1 in 3 people having that possibly life-saving conversation with their doctor. If anything there is a slight trend downwards  In 2012 it was 33%, inn 2013 it was 32% and 2014, 31% (see pages 61 onwards of the report).  If you have brain or haematological cancer the figure is 37%. If you have skin or urological cancer it’s 17% and 14% respectively.

I am sure some people would say the drift downward is a statistically insignificant drop. But consider this.

For arguments sake, say cancer research is a business. And say patients with cancer are its customers. Then in business terminology we would be informing the stock market that sales are flat, the growth forecast is poor, and there may be a case for issuing a profits warning. And we all know what has happened to even our biggest companies like Tesco when this happens.

What are the causes for this lack of ‘growth’ in the numbers of people with cancer being offered the opportunity to be part of a clinical trial? Why is this happening in a clinical area which had had the longest run-up at promoting research to patients?

I don’t know for sure, is the answer. But I hope that it is an agenda item at the next board meeting of the National Cancer Research Institute (NCRI). Finding out why and putting in measures for improvement will be important.
Arguably, for instance, the cancer patient experience survey should be one of its performance measures. Personally I would like to see us aim for results nearer 50% and 80% by 2016 and 2019 respectively. Arbitrary perhaps but we need to be aiming for something.

I do have an opinion as to what’s not happening. It may be wrong. Nor is it likely to be the whole picture. But it’s based on conversations with public involvement colleagues in cancer and others around the country over recent months.

I think our consumer groups in cancer are not being listened to as much as they should be. I think ‘change’ may be drawing them away from the business at hand. I think that they are not being given the funding and support necessary to be what they can be – an important part of the ‘sales force’ that delivers on the NHS Constitution pledge that every patient has a right to information about research. Finally, I think we are failing to engage their colleagues in the NHS workforce sufficiently in this agenda. But that goes for all conditions.

If I were invited to that next NCRI Board Meeting I would be encouraging them to look at NIHR’s strategic framework for increasing participation in research ‘Promoting a research active nation.’ It doesn’t hold all the answers. However, I would be suggesting they look at how to translate its clear and considered approach – from the research ambassadors programme to the ‘OK to ask’ campaign – to cancer. And then to back it strongly.

There are some reasons to be optimistic. The members of the NCRI Consumer Liaison Group are a formidable force and well-led. Our cancer researchers and clinicians are committed. Cancer Research UK now has a public engagement strategy, budget and team in place and will be putting more weight behind this agenda in the next 12 months. Let’s hope other cancer charities follow suit.

For this results is not good enough for people with cancer and their families.

If AHSNs are failing can we at last have a democratic space for innovation in the NHS?

Today I have been in Bolton to kick-off the NHS North West R&D Conference. 170 delegates – including patients and the public – getting together over two days to talk research. A great event and I hope they feel I got them off to a good start with my talk.

It occurred to me afterwards that I have yet to be invited to attend an event hosted by one of the 15 Academic Health Science Networks (AHSNs). These are the bodies supposedly set up to bring local and regional partners together to drive innovation in the NHS.

So where are they? No, really, I mean, where are they?

Any time I visit a place I ask what’s happening with their AHSN. Almost without exception it triggers much shrugging of the shoulders and the sort of nervous chatter that only Scoop out of ‘Bob the Builder’ can better. I can certainly tell you from
a public involvement point of view they have barely made a mark.

Are we to presume they are a failure or, at the very least, failing?

Poorly conceived, their role badly defined, working to a short-term agenda and often without focus or leadership. The results seem more variable so far than a bunch of scones made by an early evictee from British Bake-Off.

When I hear what’s happening in local public involvement, I think we can be forgiven for feeling a sense of injustice that such pet initiatives would appear to get an easy ride. If only, if only….

In February last year I wrote that AHSNs might be an opportunity to shift the consensus around the innovation agenda. In fact I thought that was part of their role! But the only shifting I can see is bottoms on seats.

So if they are failing, can we at last have something truly
innovative: an independently governed democratic space in each region where innovations can be co-produced and co-diffused?

15 ‘innovatoriums’ run as social enterprises and in the public interest. Where there is equity of access, equality between the partners and a mutual sharing of the benefits.

Fanciful? Perhaps. But given what’s happening with the AHSN
experiment, what have we got to lose?

Are we being cynical enough in public involvement?

I am sure you can imagine the following scenario even if you haven’t witnessed it in person.

A football game is poised delicately at 0:0. The home side get the ball and give it to their striker who dribbles past the away side’s last defender. The striker has only the goalkeeper to beat and surely win the game. But the defender catches up. He nudges the striker as he enters the penalty box. The striker falls to the ground all too easily. Penalty!

The home fans cheer and applaud. He did it for the team, OUR team. The away fans scream and boo at the cynicism of the player. How dare he?

I was thinking about this scenario after hearing Vivienne Parry’s excellent documentary on BBC Radio 4 last this week: ‘Patients doing it for themselves,’ about participant-led research. I am sure you can still get it on BBC iPlayer http://www.bbc.co.uk/programmes/b04grspl

Do listen. Public involvement could certainly do with the airtime.

In fact wouldn’t it be great to one day hear presenters hand over to their ‘Patient Correspondent’ or, indeed, for the presenters themselves to be a patient? God forbid we might even have a living, breathing patient present a health research programme, a whole series or be guest editor of the Today programme.

It’s certainly clear from the evidence given to the Breaking Boundaries review that people want us to do more to raise public awareness of public involvement in research. As a movement, they say, we are under-utilising traditional and social media in ways which would turn us from being an interesting phenomena, a curiosity of research, into a topic of discussion at the family dinner table or, indeed, pillow talk.

But I also wonder if we are being somewhat naive about how this publicity is going to happen – or should happen – that we deserve it simply because we are doing a good thing, performing a public service.

Even then, it is striking how we struggle to organise ourselves to come together and make this happen. Especially when compared to our professional colleagues.

For a while now I have been involved with a group of medics who have been setting about the task of establishing a new field in medicine. It has been interesting to see them forget come together to make it happen and with great focus. They are working with patients, other professional groupings and their relevant Royal College. Personal and institutional agendas are being set aside. Nearly two years on, it has been incredible to see the progress they have made.

Public involvement is also an emerging field if you like. It is barely 20-30 years old. Yet we arguably do not demonstrate the same single-mindless. And sometimes we are fighting ourselves or clambering over each other to get attention.

I was telling a friend lately that I have been reviewing a fair number of papers and articles for academic journals. In every case the piece has been rejected based on the reviewer comments.

Many of my fellow reviewers are patient leaders. Their critique has often been sound (but not always). The resulting decision by the editorial team has been technically correct because of it. But is it the right one politically for us? At this point in our development is the airtime not of greater value than whether it makes the grade academically? Perhaps we should have scored it differently as reviewers? To give it a better chance of publication. Mmmmm.

When I told all this to my friend (who has nothing to do with public involvement) he said: ‘Sounds like you are all being a bit naive: shouldn’t you be a bit more cynical and learn to play the game better?’

So what do you think? Should we dive in the box? Or would that be an own goal?

This autumn we will all be wearing….. ‘stratified medicine.’ New reports by ABPI and TSB

I note that it is London Fashion Week.  I look forward to finding out what colours are ‘in’ or ‘out,’ what I should or should not be wearing over the next 12 months.

Science is no stranger to fashions or trends.  All of a sudden you can find yourself deluged with reports and the such like about a particular topic.  It’s not always clear why.  Or what might have prompted it.  But there you go.

I suspect we will be talking a lot about stratified medicine this autumn.  Last Thursday the Association of British Pharmaceutical Industries (ABPI) held a roundtable to launch a progress report on its 2009 ‘white paper’ on stratified medicine.  The report is entitled ‘The stratification of disease for personalised medicine.’  It notes the solid progress made in the  UK over the last five years but says we are possibly off the pace if we want to be a world leader. My colleague Louise Leong has written a helpful blog here summarising the report which you can find here.

ABPI is also hosting a follow-up conference on stratified medicine on 20th November with Alastair Kent from the Genetic Alliance UK taking up the patient mantle.

The ABPI notes in passing some of the issues around patient and public information and understanding that need to be addressed. But no more than this.

So, if you want a real insight into the issues for patients and the public, Irecommend you read the new report out today on Innovate UK‘s (formerly known as the Technology Strategy Board (TSB)) website.  It’s called ‘Stratified medicine: a public dialogue.’   And it summarises the public dialogue exercise conducted by OPM earlier this year.

I confess to being a little surprised that I stumbled upon the report today because I was on the Oversight Group and hadn’t received any advance notice that it was coming out.  Maybe I just missed it totally although I don’t think I did.  It seems a little discourteous to myself and other ‘Oversight’ members to say the least.

Regardless of this, it is a shame that such a report is not getting more of a push by those who commissioned it.  This is important stuff.  And some of its messages are important matters of debate even if they might not be that palatable to those who would prefer a smooth scientific consensus to rule the day.

In particular, the OPM dialogue exercise identified challenges in four key areas as follows:

Definition and communication: challenges

— Having a clear, consistent definition of stratified medicine

— Presenting a realistic picture of stratified medicine, its pros and cons

— Continuing to engage the public and patients

Implications for patients and care: challenges

— Support patients to make sound treatment decisions

— Support patients for whom there is no current treatment

— Provide the right facilities and training to healthcare professionals

Social issues and consequences: challenges

— Understand and mitigate any implications for equality

— Define the role of the private sector in developing stratified medicine

— Develop understanding of the costs/benefits of stratified medicine

Research, testing and data sharing: challenges

— Give research participants a choice about how and who uses their data

— Reconcile the role and perception of the medical research industry

— Engage the public in regulation on data sharing

That last section will be of interest to those people who have followed the debate around sharing of personal data.* What it says is that the public want to be part of research that reflects their needs and interests. But trust is not at the levels it should be to make them feel confident and comfortable when it comes sharing data.  Especially when they see this data being shared with the private sector.  That’s the task ahead of us all – to build this level of trust.

I rather liked the comment in the report from a participant in the dialogue exercise: that the story of stratified medicine needs to be told from the point of view of the person in the clinic and their health professional.  Not from the point of view of a Minister or the organisations it might benefit.

Perhaps the rubicon yet to be crossed is that the proponents of stratified medicine continue to parade its wears on the catwalk and have yet to appreciate that, for the rest of us, it’s a question of what it will look like ‘off-the-rack.’

Health Research Authority (HRA) draft guidance on sharing trial results with research participants and more!

The Health Research Authority (HRA) is to be congratulated on its draft guidance to researchers on providing information to participants at the end of the study.  The guidance is open for consultation until the end of this month.

It takes a common-sense approach to sharing trial results with study participants. I challenge any researcher not to find a way of giving people access to study results if they so wish, after reading the document. 

Two paragraphs in the document struck me as particularly refreshing.  The first concerns thanking people for their contribution and states:

‘You should take the opportunity to thank participants for their time and interest and acknowledge the contribution that they have made to research and the improvement of healthcare. It is important that all research participants feel valued and that their contribution has made a difference. This may seem obvious but it is frequently neglected.’

The second encourages researchers to consider asking research participants to become more involved in research after a study finishes.  It says:

Invitation to take part in patient involvement

‘There is an increasing requirement to involve patients and public in the design and conduct of health research. Well-structured involvement can lead to more robust study designs with improved recruitment and lower dropout rates. One way of recruiting people to take part in this type of activity is to invite participants as they coming to the end of study to join a patient involvement group to help provide advice on future studies.

Participation in a health research study may have sparked an interest in research and this information sheet offers an opportunity for such patients to be invited to continue their involvement.’

I mean, ‘Praise the Lord.’  At last a research organisation that has cottoned onto the fact that participation might be a route to a more meaningful and productive partnership.

 

 

 

Sciencewise: 10/10 see you again – I sincerely hope so!

Sciencewise, the Government funded body which aims to improve science and technology policy-making by making better use of public dialogue, is celebrating its tenth birthday this year.

Set up in 2004 in the wake of the fiasco that was GM foods, Sciencewise has done much within Whitehall and Westminster to advance the case for a more open, robust and consistent approach to developing a dialogue with the public.  And to demonstrate how it can be done.  It can not have been easy.

Today it has published some lessons and reflection from the past ten years.  They are collected in a short booklet entitled: ‘The best of: Sciencewise reflections on public dialogue.’  There was also a webinar today which I could not attend.

Some of those lessons – such as the importance of public dialogue in the early stages of policy-making – may seem obvious.  But unfortunately they need rehearsing.  Dialogue in hindsight remains all too common (it is a key message coming from patients and the public in the ‘Breaking Boundaries’ review, for instance).

They are therefore timely reminders for those of you who are about to embark on, as I am, a piece of work involving public dialogue.  I am chairing the Health Research Authority’s (HRA) second public dialogue project.  The first can be found here.  We are just about to appoint the organisations to help us do the work and I know the resources and further reading in this pamphlet will help me and the oversight group stay true to the principles of public dialogue.

Some random thoughts came to me as I read the short version of the booklet.  It is true to say that in this age of small, central Government, there is now a real desire to get an insight into how the public think and feel about an issue so that policies can be more effectively and efficiently developed.  But Government’s do a poor job of sharing this insight as they develop policy.

Our dialogue exercises tend to focus on the ‘what’ and the ‘why.’  We ask the public less about the ‘how.’  This would seem an oversight.  Government is less capable and less willing to do things from the centre and yet my sense is that the public still view Ministers and Government as bearing the most responsibility to make things happen.  Our discourse should be as much about correcting this assumption and getting their ideas on how to build new ways of getting things done.

It would have been nice to have heard reflections from people about how they feel  Sciencewise – in terms of individual projects and in the round – has changed the public debate about science and technology as well as the degree to which it has influenced policy and implementation.  I suspect it has been more than we think, that its influence has been considerable behind the closed doors of Whitehall.

Also, given the rich material that Sciencewise must now have at its disposal (as well as NIHR for that matter following Breaking Boundaries), surely there is a case for setting up a National Library of Public Dialogue and Involvement in Science)?

Lastly, I do hope we see another ten years of Sciencewise, I really do.  It has its faults and its critics but it is essential to public discourse on science issues.

Are you a victim of disruptive innovation? Call now.

Family doctors say they are being swamped by patients complaining of disruptive innovation disease (DID). Employers have raised concerns over £000s that they might have to pay out in compensation to sufferers who complain they DID it.

But practical help may be just around the corner for these people and their families. I am about to launch a new charity Assistance for Victims Of Innovation Disruption (AVOID). There will also be a helpline: 1-GET-YOUR-OWN-BACK,

Seriously, I have been heartened this summer by news that Harvard academics have demolished the theory behind disruptive innovation and roundly criticised its proponents. See this week’s Marketing Week for the story in a nutshell:
http://www.marketingmagazine.co.uk/article/1310476/why-disruption-innovation-not-its-cracked

This is what academics are for, I tell you!

Articulating what many people have thought but didn’t have enough letters after their name to be listened to, ‘disruptive innovation,’ they say, is no more than an interesting explanation of why big companies fail in the face of upstart companies nimble on their feet. In fact it’s a more mundane version of the David and Goliath story. Only in this version Goliath is brought down by obesity and David’s nerdish obsession with technology But as a theory on which to base change management it holds little water and is positively dangerous.

If only we could persuade NHS leaders of the same; leaders who collectively seem to lack the intellectual braun to be anything other than copycat marauders of such bunkum. Why is the NHS such a fertile environment for such theories? They seem to spread as fast as the common cold and with about as much evidence behind them as homeopathy.

Even I found myself using the term in an email to colleagues this week. What a pratt I thought to myself when I re-read it. All I really mean is: we need some new ideas and to challenge and encourage each other to think then.

When I look at the places where so-called disruptive innovation has taken place all I see is lives ruined and organisations destroyed; smoke rises over the remains. For, in the same way, that people once compared the rise of patient experience to the ‘Arab Spring’ they have forgotten their history.

Revolutions more often than not turn in on themselves. The reasoned protagonists who inspired them are soon murdered by those motivated only by self-interest. The system which it is trying to replace often reacts more violently than anyone can imagine.

One of the fundamental problems I have with disruptive innovation as a concept is that it has no room for ideas around duty of care. It therefore is anathema to how we should run public services.
Activities such as public involvement which depend on developmental approaches, nurturing, humanity, continuity and a degree of stability are particularly vulnerable.

This week I have spoken to several public involvement colleagues working in organisations that for the moment should remain nameless. They talk about having three managers in as many months. Money being withdrawn as if it is a challenge they should relish. Of public involvement being redefined and spat back out at them as if they are stupid. Hideous waste of public money reinventing the wheel. Approaches to public involvement that are not about empowerment but control. All in the name of disruptive innovation.

We could be on the verge of getting ourselves in serious trouble if we don’t question this madness. At the very least, falling back several steps.

Those who argue for disruptive innovation are the velociraptors of the NHS. Grab a shiny tea tray and hold it up so they can see their reflection.

Have a great weekend.

The low hum of mediocrity can never be acceptable to patients

You can’t beat a good juxtaposition. And August seems to throw up more than its fair share.

It’s as if the soil, hard-packed by hardened hacks over many months, has been freshly tilled by novice reporters, revealing pearl white fragments of porcelain that say as much about now, as then.

This is the slow news month when the 30 year rule is lifted on a new batch of public records. And run-of-the mill things like the release of air accident reports assume a status unwarranted.

So it was last week with the Air Accidents Investigation Branch report on the FlyBe pilot whose prosthetic arm had become detached during landing. You could sense the media’s rising frustration at their inability to sensationalise this matter.

In the face of a rather doughty pilot interviewee – also with a prosthetic arm – who took it all in his stride in that calming cabin crew tone we all know so well. The splendid retort of the company that they were proud to employ ‘competent disabled’ people. And radio phone-ins dominated by the common-sense approach of the public based on their experience of being flown safely around the world every year.

As they say, actions speak louder than words.

Meanwhile, on the same day, plans for inspecting family practices were announced by the new inspector of GPs, Sir Steve Field. Sir Steve and his merry band of inspectors will be visiting and assessing practices up and down the country. Surgeries that consistently under perform, we learnt, will be put on special measures. All sounds good.

But it begs the question from a patient perspective: what the heck’s been happening before now. As the Today presenter asked both Sir Steve and the Head of the BMA’s GP committee. Very little is the answer.

Even more confidence sapping was the tone and style of the BMA’s response. This implied that, at any given moment, a certain number of practices will always be below par. They feared a blame culture developing out of the inspection regime, they said. Then pointed out all the mitigating factors why yours or my practice might be poor. From premises to funding.
http://m.bma.org.uk/news-views-analysis/news/2014/august/gp-inspection-scheme-raises-blame-culture-fears

There’s nothing like getting your excuses in first is there? All of which the media seemed to accept with a sanguine shrug of its shoulders.

How did we get to this point where it seems better to defend the low hum of mediocrity in our health services rather than aspire to make every landing a safe and comfortable one for patients and their families?

I mean, would you fly with an airline run by the BMA?

Canada takes a whole-system approach to public involvement in research

Last week, at the INVOLVE meeting for NIHR public involvement leads, a colleague asked me whether our strategic review would get near to a national strategy. I said I was pretty confident it would. Otherwise what’s the point.

You can see a copy of my presentation slides inducing an overview of the review findings here if you are interested:
http://www.slideshare.net/mobile/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

One of the most exciting but difficult challenges in front of the review panel is how we envision the future development of public involvement. So that it becomes fully integrated across NIHR over the next 5-10 years. So that in terms of impact and benefits the whole is greater than the sum of the parts.

The current focus on the ‘parts’ rather than ‘the whole’ is one of the areas of greatest risk in terms of things like the transition to local clinical research networks (LCRNs). It also supposes that people can, and are willing to, shift their allegiances from one way of doing things to another, just like that.

Here we might learn a great deal from our international colleagues who live and breathe the difficulties of federal systems. Like the Canadians.

For the last couple of years the Canadian Institute for Health Research (CIHR) has been establishing a network of SPORs – it stands for Support for Patient Orientated Research – based around its provinces.

They all share the same aims and principles including a commitment to ‘patient engagement.’ But how they are built is locally defined so as to ensure each reflects the needs of the population and the research strengths in the province. I sit on the international panel that has been reviewing these units as they have developed and I am struck by the sense of community that comes through – in stark contrast to the UK system which tends to emphasise the role of the individual.

Canada – while celebrating the different approaches to supporting research across the country – has also recognised that allowing the different parts to swell or shrink too much in certain areas can only end up in an ill-fitting jigsaw puzzle which is of no value to anyone.

So in public involvement it has spent the last six months defining – with patients, carers and other partners – a national framework for engagement which it published earlier this month. You can find it here:
http://www.cihr-irsc.gc.ca/e/48413.html#a2

Having been involved in this work a little at the beginning of the year – and knowing how challenging some aspects of pulling it together were – it’s great to see it now see light of day. I particularly like the guiding principles on ‘inclusiveness’ and ‘co-build.’

Whatever our differences we have to work off the same page.

What have people told us about public involvement in research?

Yesterday INVOLVE hosted a meeting of about 100 public involvement leads from across the National Institute for Health Research (NIHR). There are probably nearer 200 in total across the NIHR family.

This was the first time that we have ever been able to bring together people in this way. A powerful milestone.

This link will take you to a presentation myself and Rachel Matthews (CLAHRC NWL) did at the meeting. It gives an overview of the initial findings of the NIHR Strategic Review of Public Involvement ‘Breaking Boundaries:’ http://www.slideshare.net/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

They are very much initial, headlines as we are still sifting through the mass of views, opinions and evidence provided by people so very generously. We also had a Q&A session with members of the review panel with questions ranging across a wide range of issues – from funding to what’s happening in our networks.

Here are my opening remarks as well which I probably didn’t keep too! I’ve kept the slide numbers in there for reference…….

Good morning everyone.

This is an exciting day.

‘Coming together is a beginning, staying together is progress, and working together is success.’

Henry Ford

This is an important day.

Never before have we brought together public involvement leads from across the National Institute for Health Research (NIHR). In that sense, this is something of a milestone in the development, the maturing of, public involvement in health research.

So, a warm welcome to the Kings Fund and to this first INVOLVE/NIHR Public Involvement Leads meeting.

I would like to take a few minutes to preview some of the key themes for the day. The first one is leadership.

Over the last three years since becoming Chair of INVOLVE and National Director I have visited many of your organisations and institutions and I would like to thank you for your welcome and hospitality at each of these.

Now, in return, it feels important to acknowledge, celebrate and recognise you as leaders, the leadership role you play in bringing people together to make public involvement happen. That role can be exhilarating and satisfying but also isolating, difficult and challenging.

So we are going to spend a great deal of today enabling you to network, think about ways of collaborating with others, and enable us to discuss openly what shared learning and support looks like for you.

One of the reasons why I was very keen to bring us together as a community is a concern that colleagues fulfilling public involvement roles in organisations may not always have the structures and support to fall back on that other colleagues do, that we need to help support your development needs as colleagues. I hope this represents a start.

But we must also knuckle down and begin to tackle issues around cohesion, consistency and continuity in what we do across NIHR. From the language we use to how we support patients and carers appropriately to be part of research.

What does ‘One NIHR’ look like from a PPI perspective?

This is one way of looking at it – you all gathered together in this room. Over 100 of you. But there are in fact 180 people across NIHR and AHSNs who have a public involvement role who could have been with us today and that’s not including colleagues in CTUs, NHS, Universities etc.

But we also have to think about what ‘One NIHR’ looks like from outside, and most importantly from a patient and carer perspective.

Thinking about that first quote I shared with you from Henry Ford and what he did to introduce the first mass produced car, a key challenge for us is how we spread and embed public involvement?

How do we enable anyone to join us and make the contribution to research that they feel most comfortable with? How do we make it easy to drive from a patient and carer perspective, and enable them to drive to where they want to get to?

[final slide]

I hope that you will leave today, enthused and excited about your role, and what we can do together to create and lead the future in public involvement with our patient and carer colleagues.

Statins: medicine sprinkles its pills but this ain’t no fairy dust

When a news story features as a topic of conversation in the queue for the school play you know something is happening, right?

On Friday I overheard two parents talking about statins while waiting for the doors to open for the final performance of the ‘Aristocrats.’

Earlier in the day the National Institute for Healthcare Excellence (NICHE) had said many millions more people should be prescribed statins than are now on them, to prevent heart disease. Cue an unholy row within the medical profession as to whether the evidence really does support such a directive? And an inevitable slew of
post-announcement stories about the harmful effects of statins.

‘You don’t know what to believe any more do you?’ said one parent. ‘It can’t be good for you to keep taking all these pills, though’ said another.

Yes, it all leaves you and me – the citizen – just a little bit stranded.

When I heard the news come over the wireless on Friday morning my first reaction was that NICE had taken leave of its senses. Not so much because of what it said but how it said it?

Here we were, 18 million adults being crammed into the medical profession’s consulting room to be told what’s good for us. It sounded like the arrogant proclamation of a despotic nation. Not what would you want from your drugs regulator.

Surely it asked its communications people how it should handle the news sensitively and moderately? What did NICE’s Citizens Council think of the decision? And if they weren’t consulted why not, given the wider societal and cultural implications that an announcement of this sort has? We have significant ‘relationship’ issues with medicines – from taking too many to not taking the ones we are supposed too – as a society, and I can’t see how this helps.

In fact, given the ready divisions among doctors about the merits of statins, you have to question whether it was responsible to drop this sort of news on us from such a very great height and without a) some serious work beforehand on developing a clear message that
professional bodies and patient groups could stand behind and, b) putting some decision aids in the hands of citizens.

The exchange in the queue may cause many to worry. Or to shake their heads about the ignorance of people. But oddly it gives me reason to be optimistic. That people will treat what they are hearing with the best pill of all – a good dose of common sense.

Talk to your doctor.

The play was good by the way.

It’s the citizen, stupid!

Before I start is anyone else struck by the similarities between the hysteria of some science commentators over the new Science Minister, Greg Clark’s, signing of an EDM about homeopathy in 2007. And the reaction of the enslaved and brainwashed monsters in Monsters Inc to being touched by a child or even just their clothing in the course of their work to power the city by collecting children’s screams…..!? ….

The General Election campaign more or less started this week with David Cameron’s cabinet reshuffle. It’s going to be a long summer, autumn, winter and spring in the run-up to May 2015.

But we may as well start thinking about our own manifesto, campaign and election rhetoric then. Time to reclaim the language of public involvement and hold our politicians and policy-makers to account.

My campaign slogan is going to be: ‘It’s the citizen, stupid.’

During the 1992 US Presidential Election Bill Clinton’s strategist, James Carville, crafted three key messages to keep the campaign focused on track. The most famous of these is: ‘The economy, stupid.’

The insistent calling to account over the recession hit economy was the undoing of the sitting President George Bush Sr who, we should not forget, had been riding high in the pills following the first Iraq war.

In similar vein to Clinton and Carville I shall be asking our politicians: How will you empower the citizen? How will you involve us in your decisions? How will you help my community?

Interestingly, the other two messages Carville wrote on his campaign noticeboard way back then were:
– Change versus more of the same
– Don’t forget health care
I am not sure about that first one. On that second, I think Cicero put it best don’t you, when he said: ‘Let the welfare of the people be the ultimate law.’

There you go, from Randall Boggs to Bill Clinton to Cicero. Have a good day.

Patients as renewable energy? We’re bloody knackered Simon.

You may recall a few weeks ago the new NHS Chief Executive, Simon Stevens, referring to patients and carers as the ‘renewable energy’ in health and social care. A good notion. A noble notion.

Yet I am having far too many conversations at the moment which are with, or about, colleagues who are flat-out exhausted by the demands being placed on them. An increasing number are taking themselves out of the picture either permanently or temporarily for their own well being. That’s if they can. Not all of us have this choice.

This can’t be right. What are we doing to people?

When I think of the overdrive that NHS organisations have gone into to ‘capture’ (now there’s a telling word) the patient experience a certain image springs to mind. It is the scene in the film version of H.G.Wells’ Time Machine of thousands of people in the future being called by their overseers and disappearing into the mouth of a huge cave. They are never seen again.

It is of perennial shame that, in our health and social care system, patients and carers generally feel taken for granted when giving their wisdom willingly to make the system better. It’s not just about expenses and reimbursement either. Pastoral care is in short supply. Roles that are supposedly about one or two days a week become 24/7. You will be lucky to find a decent volunteer policy in place.

It can be frightening, exhausting, dispiriting and frankly bad for one’s health to be plying the lone furrow of public involvement. All seems set against you. So you try harder, thinking that any failure must be your fault. Until, before long, you are stuck in what can only be termed an abusive relationship where everything you do feels taken for granted. It’s no way to treat citizens. It’s the surest way to achieve burn-out.

And it can be similar for the increasing numbers of people who are now doing paid roles in public involvement. In fact, I worry that these colleagues sometimes feel further stigmatised by those they serve because they receive a salary – how dare you take money, you can’t surely be on our side if that’s the case?

It’s one of the reasons I was keen for INVOLVE to bring together public involvement leads from across NIHR to meet and network and find support. 130 of them will meet in London next week and I hope that by nurturing and supporting these colleagues we can ensure patients and carers do receive the support they need in the future.

If patients and carers are really the renewable energy in health and social care then perhaps we should extend that analogy to think about everything that goes with it to make it happen – tax breaks, investment, fast-track planning permission, a Government Minister for. For at the moment this is not a win/win for patients. Only a win for a system that’s turning ever-faster.

One last thing. The best bit of my week so far was a coffee and chat with a good friend and colleague. It boosted my spirits no end. Afterwards he emailed and signed off ‘we must take of ourselves – no one else will.’

Take care of yourselves. But let’s take care of each other as well.

X

Lessons I learnt from the Alzheimer’s Society story of public involvement in research

The Alzheimer’s Society has published a new booklet entitled ’15 years of the Research Network.’ http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2261 It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity’s £5.3M research programme, some of their achievements, and a short history of how it all got started.

The story of the network – originally called Quality Research in Dementia (QRD) – is often held up to be a tale of one of the pioneering organisations of public involvement.  With some reason, not least the fact that it started its journey in 1999. The Society remains at the vanguard of charities plying this route within the not-for-profit sector many years later. It is disappointing and a matter of debate why more charities have not embraced public involvement in the same way.

I was working at the Society at the time when the idea of QRD emerged. I worked on the first public awareness campaign about dementia and research which contributed to this thought process. This won an industry award. Yet I had very little to do with the network’s setting up I am afraid. led organisations. 

The Alzheimer’s Society ‘Research Network’ story contains a number of universal lessons about public involvement in research. Some I have written about before.  But not all.  In brief, they are:

Time: It takes time to form, establish and embed public involvement in an organisation until it becomes part of normal business. No one ever tells you this at the beginning. Some people behave towards public involvement as if it should somehow flow freely once the tap is turned on. Think again.  Running water is only guaranteed if you prepare well and have a well-thought out plan in place.

Keep it simple: The quotes at the end of the booklet convey this best. The essence of public involvement is about bringing people together who have different perspectives and enabling them to focus on the same issue or challenge as equals.

Leadership: Nothing happens without leaders. But just as important as the avowed champion, is the sceptic who is brave enough to say to his colleagues: we should give this a shot because maybe, just maybe, they are right.

Continuity : Comes from money and appropriate budgeting. It is also a consequence of staff and patient leaders being supported to carry the torch. Through bad times as well as good. The Society booklet was written and produced by members of the network including many who have been there from the start. The network would not be what it is today without their staying power and memory for what it was like before. Many of them are also the patient champions who are now instrumental in the Society’s work around the Prime Minister’s Dementia Challenge.

Above the line: When it comes to public involvement in research you must be willing to put everything ‘above the line’ and up for discussion by patients and carers. It may be that you agree to put some bits off until later. But, at the beginning, you must show as an organisation that you are brave enough to listen to what people have to say – however hard – and turn this into an agenda for improving the quality of what you do.

The double standard in research that holds public engagement back

I listened to the radio this morning with rising irritation. Two scientists were locked in debate over the EU Human Brain Project.

Yes, it would be farcical if not true, but the EU (including us I presume as an EU member state) is pumping huge amounts of money into a hair-brained idea to replicate what the brain does with computers.

What made me spit in anger over my high sugar content ‘Frosties’ (sorry, CMO), was the defendant’s protestation that ’15 Nobel scientists’ had backed the project.

Of course they would. In the same way that David Beckham orders the latest Lego kit. Or they indeed help each other clamber up the honours system. They just can’t help themselves.

In a society scarred by so much poverty and human suffering it seems a scandal that we should be wasting yours and my money on fairy tale science of this sort. It is spurious at best and disingenuous at worst for the scheme’s backers to justify it on the grounds that it will help in the fight to beat dementia. Many others things will make a much bigger difference before they’ve even replicated 1/10 of Stephen Fry’s intellect.

The other reason it angers me is admittedly self-interested. I realised last week that I had unwittingly become an apologist for the lack of funding that goes into public involvement and engagement activities. You know the arguments, tight funding round, strategic priorities etc etc.

No more. We must fight our corner very hard now.

Good public involvement and engagement work is likely being strangled at birth. Local patient groups are disappearing or having to go cap-in-hand to others for support. Grant applications for research to help us know what public involvement interventions help research – yes, I said, help research – are spiked. The reason given is that they are not deemed close enough to the patient experience. And the EU Human Brain Project is?

Yep, the double standard against which have fought so long, is alive and well. It is cynicism dressed up as skepticism.

If I had been given £10 for every time I have been asked by
researchers and patients why we don’t run a national public awareness campaign on clinical research I could probably run one tomorrow. Y’know what? We should and we should argue hard for one beginning today. It is a strategic priority if research wishes to save itself from a 7:1 drubbing some time in the future.

The current flawed decision making around support for public involvement and engagement in research is reminiscent of the arguments I used to hear from sniffy Boards about PR and communications twenty years ago.

That all changed with modern media when companies realised they could go to the wall or their share price tumble on the basis of a bad news story or internet driven rumour. Now, heads of comms sit on the Board in the best run organisations. Their CEO’s often cite corporate reputation as the most important challenge they face.

Politically (and I use that word quite deliberately) and practically, public opinion is going to play a very important role in determining how research emerges from the next General Election and the subsequent spending rounds that Government impulses.

Treat the public like fools and we will
look like fools ourselves before not too long.

Bereaved parents of babies in clinical trials want ongoing involvement in research says NIHR funded study

There is a lot of research that we hear about in the media which enthrals and amazes with big numbers, amazing finds and clever ideas isn’t there?

And then there is research that I find genuinely affecting for one reason or another. More often than not, because it tells us something about the human condition.  Sorry if that sounds a bit over-sentimental.

But it’s how I felt when I read this study about bereaved parents wanting ongoing involvement in research after the death of their child.  The Bereavement and Randomised Controlled Trials Study (BRACELET) study – the first to look at death and bereavement in the context of clinical trials involving babies and children – was led by the London School of Hygiene & Tropical Medicine with researchers from UCL, Oxford, Newcastle, Cambridge. 

During the seven year study, the researchers conducted over 100 interviews with clinicians, trial team members and bereaved parents from five neonatal clinical trials to find out about their experiences and you can read the full paper on the NIHR Journals Library.  I should add that the study was funded by the NIHR Health Technology Assessment Programme.

The study found that for many parents, the fact that their child was on a trial receded into the background during the time they were alive and being treated.  However, after the death of their baby, they were positive about wanting contact and almost all wanted to see the trial results.  To quote the news release:

‘These parents attached a high level of importance to being sent the trial results as an acknowledgement of their baby’s contribution to research for a complex array of reasons, including as a basic courtesy from the researchers, and as an opportunity for further remembrance and commemoration.’

The paper notes that there was great variety between the trials on whether bereaved parents were contacted afterwards. The study team calls on clinicians and researchers to develop a co-ordinated strategy to ensure that parents have are given the option of remaining in contact and accessing trials results afterwards. 

Dr Claire Snowdon, lead author on the paper is quoted as saying: “The BRACELET Study has also shown that bereaved parents of babies in clinical trials are important stakeholders in research, and the practice of routinely excluding them from studies of how trials should be conducted should be changed.”

 

Hear, hear.

Blog: public involvement is not built on one-night stands

Some time ago I took part in an event where the organisers thought it would be a good idea to try something new.

As well as the usual plenary speakers and workshops, we were going to get people there to text and tweet questions which speakers and panellists could answer during the day. Sounded perfectly laudable in that oh-so-common eerie, pre-event idealism that we have all been party to in our time.

Come the day it all went just a bit awry. It’s true that a large number of the audience had mobile phones. But did they text or tweet? No. Cue ill-fated crash course in social media by the organisers; helped – or rather not helped – by those in the audience who claimed to be the leading exponents of new technology.

The low-level murmur of frustration in the room was beautifully broken by a mildly bemused woman in the front row: ‘Can’t we just put our hands up?’ she asked.

I remembered this story last night as I read a rather cheering report by The Participation Agency entitled ‘Fostering Meaningful Engagement’

https://participationagency.files.wordpress.com/2014/06/fostering-meaningful-engagement-the-participation-agency-june-20141.pdf

They also have a blog here.

The report is based on a survey of organisation across the voluntary, public and private sectors. It looks at what these organisations are doing now, some of the challenges faced, but also their aspirations for what they are terming public engagement.

I was heartened to read that people were looking forward to their organisations doing more, collaborating more and being more targeted and strategic. Also that people felt there would be an increase in co-production of public services. A good proportion of respondents – 46% – said they felt that engagement was having a ‘transformative’ effect in their organisation. But I also agree with the report authors in their

observation that people do tend to overlook and undervalue if not under-utilise the means of evaluation for this at their disposal.

I’m less inclined to cheer about the clarion call by the respondents for more creative methods and tools for engagement. Over 50% said they wanted new tools. On the other hand, there was a strong recognition of the need to develop better evidence about what is effective.

I am reminded of the pilot’s adage that there are old pilots and bold pilots but no old, bold pilots. In a similar vein, I would say that in public engagement we should only care about tools that work. Thirst for the new (and don’t get me wrong I’m as thirsty for a new idea as anyone) can be quenched. But it can so easily be at the expense of the old and effective, with little evidence or careful thought behind it (my story being an example).

It can also betray a lack of appreciation that at the core of public engagement is the daily commitment and discipline (perhaps grind at times) that goes with building relationships over time. It’s lasting, fruitful relationships we are after. Not smash and grab raids on the public consciousness which lots of engagement work seems to veer towards when not thought carefully about. Truth be told I was therefore also cheered up by the fact that people thought they would be doing less surveys in future.

Anyway, to put it succinctly: meaningful public engagement is not built on one-night stands.

So keep innovating by all means. But as you do, think about your new idea and ask yourself whether it might be better to simply ask people to put their hand up.

3 million and rising: the secret to recruiting more patients to trials could lie in better training for doctors and nurses

3 million patients have been recruited to clinical trials over the past six years.

That was the impressive bit of news put out by the National Institute for Health Research (NIHR) Clinical Research Networks yesterday. You may have heard its Chief Executive, Jonathan Sheffield, on local radio talking about we have got here and the important part played by patients both as participants and in shaping clinical studies.

It would seem the networks have smashed all sorts of records in the last year (http://www.thepharmaletter.com/article/record-year-for-commercial-contract-clinical-research-in-england ) . Some of those by individual trusts – and you can see what your own NHS Trust has been up too here: http://www.theguardian.com/healthcare-network-nihr-clinical-research-zone/table/nhs-trust-research-activity-league-table-2013-14 It is a sign that the message is getting through to the wider NHS.

So how do we push on from here? How do we grow the numbers of patients in trials? The ongoing reconfiguration of national networks into local research networks will help by moving how we think and operate closer to the point of contact with patients.

As will campaigns like ‘Ok to ask.’ I would like to think that the bump in network performance during the 2nd Quarter of 2013/14 is down to our first ‘Ok to ask’ campaign that May. It is a thought that has no basis in fact of course, but allow me my fantasies please.

Another way may be by improving the training about research that our wider NHS workforce received. I would like to thank Sir Iain Chalmers for pointing me yesterday in the direction of an excellent paper by Professor Jennifer Donovan at Bristol University and recently published in Trials: http://www.trialsjournal.com/content/15/1/5

It makes fascinating reading. It looks at ‘clear’ and ‘hidden obstacles’ to recruiting patients based on interviews with doctors and nurses involved in recruiting to six Randomised Clinical Trials (RCTs). The most significant hidden hurdle is the degree to which – often very understandable – professional and personal anxieties among recruiters lead them to make judgements about patient eligibility and effectively deny patients from having a choice. In one instance where a training intervention was made, recruitment to the trial improved markedly. The paper goes on to argue the importance of training our workforce in such a way that the decision to join a trial is – my words – truly shared between patient and doctor.

I wonder whether a public involvement intervention would also have helped? In fact I think there’s something between the lines of this paper which is about professional understanding and appreciation of the patient experience.

I hope that brief summary does the paper justice and, more important, is fair and accurate.

Training issues are being actively addressed. I have been very impressed with the work being done by Susan Hamer at NIHR CRN and many others to put in place a programme to support the career development and progression of clinical research nurses.

Health Education England (HEE) recently finished consulting on their strategy for developing a research savvy health and social care workforce. And the Association of Medical Research Charities (AMRC) have been important in raising this issue across Westminster and Whitehall as part of their vision for the NHS.

Earlier this week I attended a most absorbing discussion hosted by the International Academy of Clinical Research. Launched in 2011 it had been agitating ever since for a competency and accreditation framework in clinical research. Dry stuff you may think. So did I. Until we began to do some group work looking at recent US Federal Drug Administration (FDA) warning letters to sponsors of clinical trials about poor and possibly fraudulent practice. From patients not being consented properly poor record keeping. It was quite an eye opener.

It’s then you realise that training is not just about ensuring patients have an informed choice but also that their safety is assured.

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