Department for Business Innovation and Skills

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.

I see that Cancer Research UK last week put out a press statement about the need for the UK to have strategic vision for medical research. You can find further details on their blog and they also issued a document entitled ‘Building the Right Environment for Medical Research.’

Thoughtfully the announcement and document have been sensibly timed so that you and I can carry it under our arms during the party conference season now upon us. All with the aim of stimulating debate in the run up to the Government consulting on and producing a research and innovation strategy. And how overdue is that particular gem I ask you?

‘Building the Right Environment’ is a curious document. It might seem strange but the main thought I had after reading it is that it would be hard to disagree with any of it. Is that because it it’s smack on the mark in terms of its prescription, or not challenging enough?  Discuss.

When I jotted down my initial reactions this is what I came up with, warts and all:

  • The conclusions are based on interviews with thirty or so Cancer Research UK scientists so, naturally, it reflects the priorities of that community. Nothing wrong in that and many of them are common to us all across science. But if you’re fighting for a rarer cause then your concerns are probably a bit more ‘fund’-amental. 
  •  Other partners involved in research such as patients might have an alternative but helpful perspective.
  • The recommendations are all good but quite specific and tactical. Each has a strategic role to play but it would be good to have  seen something in it to say how it might all hang together in terms of a coherent vision for UK medical research.
  • It misses some of the big stuff. To take clinical research for instance it rightly talks about the new Health Research Authority but there are other tussles that need addressing to get us further – how to integrate all the parts of NIHR into one system for instance, or how to engage the public in such a way as to drive up participation in and recruitment to trials. This is the additional stuff that is going to weigh us down.
  • I would like to have seen it pose some strategic questions for debate rather than simply proposing answers to a much-spoken about but ill-defined problem. What are the main challenges to how we do things now and is our model sustainable in the long-term? Again, things like clinical trials networks are well-embedded in the world of cancer but have some way to go in other fields.  How do we get there…quickly?
  • It doesn’t really look at the relative role played by different research funders and how this might be thought through – together – so we are more strategic as a community. Should charities be clustering around disease areas for instance in the way that we have therapeutic clusters developing between academics and industry (that’s off the top of my head)?

I just throw this out there.  As I am sure they would readily admit, Cancer Research UK does not have all the answers to our woes and that’s an open invitation to the rest of us.  So, if this document gets us to think a little deeper and debate more then that has to be a good thing.   

In that spirit I welcome it just as others have.  But I can’t quite get rid of a nagging feeling that it would have been great if it had gone just that little bit further.

If you believe the Government – any Government in fact – we are all entangled in webbing made of regulation red tape that makes us look like one of those mummies emerging from a tomb in a 60s Hanna Barbara cartoon. 

However, I can’t help but agree on this occasion.  

I don’t know about you, but returning home in the evenings can become a rather painful process of physically and psychologically shedding the red tape of the day.  Even my dogs check the public notices at entrances to parks these days, so sensitised have they become to life in Britain circa 2011. 

But it is not the known regulations I worry about; there are regulations we know we know.  And we also know there are regulations that are unknown to us; that is to say we know there are some regulations we do not know.  But there are also unknown unknown regulations – the ones we don’t know we don’t know.  Now, they are the ones that scare me.

And in my opinion, it is often the case that someone’s interpretation of a known regulation can make it become an unknown unknown regulation.  I even came up with a new metaphor for how it is affecting our lives – the ‘red tape worm’ – after reading this week’s excellent issue of Eureka about cyberwarfare and computer viruses.  I must put that in writing to the new Health Research Agency when it is established this year.

Do you follow?  Well, don’t worry if you don’t because you have a chance to cut red tape for yourself – just like pruning the spring shrubs – at the Department for Business Innovation and Skills new ‘Challenge Red Tape Website.’  Health and social care comes up on June 23rd.

On a more serious note, I would probably put the rules that have often stood in the way of patients and members of the public receiving some form of reimbursement to be involved in research, as an example of a known regulation that has, historically, become a baffling set of unknown unknown regulations.  First, because of the way the rules have been interpreted up and down the country.  Second, because of the way that the way that the Department for Work and Pensions (whose acronym of DWP sounds perversely like a socialist party) dragged its feet to find a way through the mess.  Yes, this is an issue which has ‘form’ (pun fully intended) as they say in the police.

However, I am pleased to say that we are now seem in a better place.  And the excellent INVOLVE have this week published a rather splendid guide entitled ‘What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research’ which you can find on their website.

I’m off to shed my regulations as they say.

The world has gone consultation mad.  Another two dropped into my inbox yesterday.  I’m seriously considering booking myself into consultation rehab.  A few days off next week will at least allow me to undergo an intensive consultation detox programme in the meantime.  

For those of you who have set aside today to write a response to a consultation paper here’s my top three tips: keep it short; make the questions work for you and; don’t just send your response to the reply box, share it with others!

One of the more interesting consultations to have appeared since the beginning of the year is the Office for Life Sciences’ stock-take of developments in regenerative medicine building on the work of the UK Stem Cell Initiative.  As you may recall, regenerative medicine (stem cell research)  is a key plank of the MRC’s strategy and delivery plan announced at the end of last year.

Interestingly, the term ‘stem cell research and charities’ is one of the phrases that most often brings people to this blog from search engines – I think the term now used widely is ‘trending.’  For good reason given the news it is getting.  And I thought this was reason enough to do a bit of a focus piece today.

Stem cell research is one of the most exciting avenues for research right now and, given its potential, it is no wonder that charities are increasingly involved in, if not at the forefront, of such work.  I guarantee you that in any given week, a Google news search for medical research will result in several headlines about stem cell research and that at least one will have a charity component.

The hot news in the sector this week has been the British Heart Foundation’s ‘Mending Broken Hearts’ campaign to support a £50 million programme of stem cell research.  You can view one of the videos from that campaign by clicking on the video screen to the right – yes, just an added reason to visit this blog again and please do suggest videos for me to include!  But I was also interested that AMRC’s 126th and newest member charity ‘Restore Burn and Wound Research’ has stem cell research at the heart of its research strategy.  I could, of course, have pointed to many other examples of such work being pursued by other charities.

I asked my colleague, Dr Kieran Breen (Research Director, Parkinson’s UK) to say why such research is important and here’s what he said:

‘One approach for the treatment of Parkinson’s is to replace the nerve cells that have died. Stem cells are a promising tool with which to achieve this aim. These cells can be transformed into specialised nerve cells that can then be transplanted into the brain. There are multiple sources of stem cells. They can be obtained from an embryo at a very early stage of development. Alternatively, they can be generated by reprogramming specialised cells such as skin cells. Each source has its advantages and disadvantages so it is vital that we keep all avenues open in our search for an ultimate cure for Parkinson’s.’

We did a rough search on our database here and excluding collaborative ventures, larger programme grants and capital projects (simply to get a sense of the depth rather than breadth of interest in the sectot) we identified 24 charities that funded 104 projects or fellowships involving stem cells amounting to almost £10million. Given that was up until 31st March 2010, I have no doubt we have seen a further expansion in this profile but the AMRC member charities pursuing this line of research in one way or another and who appeared in our search include the following:

Action Medical Research
Alzheimer’s Research UK
Arthritis Research Campaign
Association for International Cancer Research
Ataxia UK
Bardhan Research and Education Trust of Rotherham Limited
Breakthrough Breast Cancer
Breast Cancer Campaign
British Heart Foundation
British Lung Foundation
Cancer Research UK
Diabetes UK
Fight for Sight (British Eye Research Foundation)
Guy’s & St Thomas’ Charity
Juvenile Diabetes Research Foundation (UK)
Kidney Research UK
Multiple Sclerosis Society
NACC
Parkinson’s Disease Society
Royal College of Surgeons of England
Royal National Institute for the Deaf (RNID)
Sir Jules Thorn Charitable Trust
Wellcome Trust
Yorkshire Cancer Research

I am sure there are others and apologies in advance to any members who I have missed off the list (happy to miss them). 

I feel that one of the difficulties the general public probably has at the moment is in trying to untangle the flood of news stories on stem cell research and get a sense of those discoveries that are near to application with patients.  A number of AMRC members like the MS Society have pages which list some of the most interesting trials.  You might also try searching on the new (in beta phase)  UK Clinical Trials Gateway being established by the National Institute for Health Research (NIHR).  I did a very simple search this morning and it churned out 16 trials.

The fact that we have a strong and stable environment in the UK including a sound legislative framework is an important reason why UK stem cell research is prospering in this country.  You only have to look at the ensuing stop/start debate in the US to understand why.  It’s a crucial facet of our current environment and we must hold on to it whatever changes there might be in arms-length bodies and regulators.

You might be interested to know that AMRC is currently revising its position statement on stem cell research to bring it up-to-date.  Don’t worry, we are not issuing a consultation paper, but I am always open to suggestion of how to make these things be more meaningful to the media, public and our partners.

And finally, if you’d like to read around the subject a bit more I can highly recommend the website of the UK National Stem Cell Network (UKNSCN) as a starting point.  Also, don’t forget the forthcoming public engagement events on stem cell research that AMRC is doing with UKNSCN, in London on 7th March and York on 29th March.  I encourage you to root around some of our member sites as well – for instance the MND Association’s research blog – where they will often post regular updates on what is happening.

I’m off to tear up a consultation paper….

Two down, one to go.  Here’s science related ‘matter’ at the Conservative Party Conference which starts in Birmingham tomorrow.

Birmingham University was of course the venue for the Science Minister, David Willett’s, first speech after taking office.  I am looking forward to being one of the hosts when he joins us for a roundtable breakfast on Wednesday.  I have been speculating whether he eats ‘clusters’ for breakfast or plain old corn flakes person.

In terms of the formal conference agenda items of interest include debates on ‘Big Society and People Power’ (cue a reminder to sign the Science is Vital peititon which has over 10,000 signatures now including support from the Wellcome Trust) on Sunday afternoon, ‘The Economy’ on Monday morning before lunch, debates on publci services and welfare onTuesday and the Prime Minister and Conservative Party leader, David Cameron, speaks on Wednesday afternoon.  You can see the agenda here.

My pick on the fringe….I shall be chairing the ‘Innovation as a cure’ meeting organised by Alzheimer’s Research Trust, Anthony Nolan and ABHI on Sunday evening at 5.45 or there is the Breakthrough Breast Cancer tea party starting at 5.30pm if you prefer, and another of our charities, Ovarian Cancer Action is looking at women’s health at 9.30.  The latter features Sarah Wollaston MP who is on the Health Select Committee and a GP.

You can kick off your Monday at 8am with Birmingham Science City which has a fringe entitled ‘Innovation and the Green Revolution.’  A bit later at 12.30pm why not decompress after George Osborne MP’s speech to conference by going to the British Chambers of Commerce debate.  I only mention it because the Financial Secretary, Stephen Timms MP, and Shadow Business Minister, Will-Butler-Adams MP, will be speaking.  Surely after hearing from this trio we might be able piece together a narrative for economic growth?

But I am sure most of you would prefer to hear David Willetts speak at the NESTA fringe which is taking place at the same time (12.30pm) on the subject of ‘Made in Britain: Building a 21st century economy.’  Either that or hearing Earl Howe, the Department of Health Minister responsible for medical and health research, speak at the ‘Research to the rescue’ fringe at 12.45pm hosted by BHF, Diabetes UK and the Stroke Association.

The Guardian’s engaging Michael White chairs the Health Hotel debate on Monday evening (19.30) and Health Secretary Andrew Lansley MP is speaking at the Health Hotel reception afterwards (which is invitation only sadly, what happened to the days when you could walk in to these things).

The 1994 Group and others hold a lunchtime debate on the future of higher education at 12.30pm on Tuesday and so are Reform with Universities UK at 1.00pm with David Willetts MP invited.  This one is called ‘Building the Future: Higher education and economic growth.’  [nb: one of the perils of conferences is the fact that many similarly-themed fringe meetings clash but I find you can run from one to the other if you are quick on your feet).

Also of interest on Tuesday lunchtime is the Asthma UK, Novartis Pharmaceuticals UK Ltd and Smith Institute fringe: ‘Can Health Cuts Be Good For You?’ Andrew Lansley is down to speak at this one which starts at 1.00pm. 

The Royal Society takes its ‘Scientific Century’ debate to conference on Tuesday evening at 7.30pm with David Willetts MP, Paul Wellings (Chair of the 1994 Group) and Brian Cox.  The Chemical Industries Association pop up this week with their own event at 7.45pm looking at ‘Science Education: The next deficit’ which looks more like a reception but I might be wrong.

And that’s it….a much busier conference than the other two as you might expect.  I look forward to seeing you there.