Author: simondenegri

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An Open Letter to the 15 Chairs of the AHSNs Reply

medical research

Dear Colleagues,

I understand that you have just received your letters from the Department of Health confirming your designation as an Academic Health Science Network (AHSNs) subject, no doubt, to a few refinements. Congratulations.

Me and my colleagues from across the world of public involvement are looking forward to working with you to get innovations out to patients and the public more quickly and efficiently.

In making this happen, we hope that the AHSNs – independently and collectively – will embrace public involvement as a core principle for the way they operate and from the beginning – as the National Institute for Health Research (NIHR) has done so successfully since 2004/5.

From a strategic point of view – and based on our experience – public involvement is an essential partner in delivering:

- accountability to your community and air cover for what you do
- value in ensuring that the work you undertake fits with the needs of your population
-efficiency, not least in making you more effective in engaging the public and getting them to take part in what you are doing
- innovations that actually work for patients and carers in hospital and at home not just in the lab

In the current climate and amid the concern to ensure a more accountable health system it would seem logical to embrace a partner – the citizen – who can help make this happen. If I am honest many patients and public I talk to think that AHSN will be another of those great British academic carve-ups. Indeed, often it is the institutionalisation of innovation and not our NHS that holds up progress of patient benefit. So it would be great to prove us wrong.

The wonderful thing – and you will appreciate this given that innovation is often about smart adaption of what exists to fit a new context – is that you have a wealth of public involvement experience to lean on. Not just in NIHR but in our clinical research networks, CLAHRCs and many patient groups as well. We don’t just know how to do this stuff, we actually know how to do it very effectively and this is why it is getting increasing attention from abroad. We know that we can make a real difference in the AHSNs as well.

For the last few weeks up until yesterday, I and many others have been working on the ‘Ok to ask’ campaign for International Clinical Trials Day (ICTD). Over 200 hospitals took part with many inspiring and exciting examples of people coming forward to take part in research but also being innovators in their own right. From children to old people, the desire is there to help they just need to be asked. So I know you will want to be at the forefront of what we do next year.

Finally, a small but important point. Few people will know of your existence in your area. The very term AHSN does not lend itself to dialogue except perhaps between its collaborators. Perhaps Networks can begin to demonstrate their ability to think out of the box by calling themselves something that is not an acronym,that will resonate with people.

I can’t wait to get started with you.

Best wishes,

Simon

Clinical research? It’s a people thing. 2

medical research

I can’t do policy or politics today. Sorry.

Wherever you are and whatever you are doing for International Clinical Trials Day (ICTD) and NIHR’s ‘Ok to ask’ campaign I hope it is going well.

For me, it has been all about the people I have met over the past week.

76 year old Anne, diabetic and badly disabled, who I chatted to over lunch at a dementia conference in Bristol. She decided to go the event because friend and neighbour has dementia and she thought it would be good to find out more about it. I think she might have been flirting with me when she invited me to her care workers birthday party.

Elaine who shared the green room with me at the radio studio on Friday morning. Elaine is in remission from breast cancer and told listeners up and down the UK about her positive experiences of being on a drug trial. I hope her Trust does the right thing and grants her wish of becoming a research champion volunteer.

Susan Moore who stole the show at the
Central Manchester Foundation Trust public event ‘Showcasing Medical Research.’ Susan is Chair of the research user group for the musculoskeletal work being done there and I can see why she is so highly valued by her colleagues. Professor Ian Bruce similarly gave a model example of how to talk about research to a mixed audience.

And the many clinical research nurses (CRNs) who contacted me after their annual conference last week with ideas and issues they are committed to help sort out with patients. Really, how long until we properly recognise how pivotal CRNs are to involving patients and the public?

Not to mention, the tweets, pictures, events, media stuff (watch out for Dame Sally on the 6pm BBC news by the way) and much, much more.

Clinical research. It’s definitely a people thing.

CCGs, Healthwatch, put research on your agenda for Intl Clinical Trials Day (20 May 2013) #nihroktoask Reply

medical research

Good morning.  There is one week to go before International Clinical Trials Day on 20 May.  NIHR’s ‘Ok to ask’ campaign is off to a flying start with 150 hospitals already signed-up to take part.  Remember, you can find out more details on the ‘Ok to ask’ website.

A number of Clinical Commissioning Groups and Healthwatch organisations have been in touch to ask: ‘what can we do?’  Well, I hope they will join forces and support their local research networks or NHS Trusts in events they already have planned would seem an excellent idea.

But there is another important way in which you can mark International Clinical Trials Day and help improve the opportunities for patients to take part in clinical research.  All NHS organisations have new duties to promote and advance research under the Health and Social Care Act 2012.  Many have only just begun to grapple with what this means and how to fulfil them.  That’s understandable given the major changes that have just happened.

So, how about making sure there is a 15 minute item on the agenda for your next CCG or Healthwatch meeting entitled ‘Improving patient choice in research.’  Don’t even worry about having a paper written for it.  Why not just have a roundtable discussion about what this means for the Board and how it might take things forward with other partners including patients and the public.

A next step might then be to have a paper written setting out a strategy.  By putting it on the agenda you will be beginning to set the future agenda for research in your area. Think of it as research’s 15 minutes of fame but with reprints for years to come…..

Time for a chat I think! Intl Clinical Trials Day, 20 May: ‘Ok to ask.’ Reply

International Clinical Trials Day, medical research, Ok to ask

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NIHR is heading-up a campaign for International Clinical Trials Day (ICTD) on 20th May entitled ‘Ok to ask.’ Its aim is to empower more patients to talk to their doctor about research.

I happen to be writing this from Bergen in Norway where I am speaking at the Nordic Health Research and Innovation Conference later today.

The chiseled coastline here is known for fjords and its numerous small islands; frozen tears tumbling down granite cheeks. Over dinner last night, two of my fellow delegates – both clinical research nurses – told me about the arduous island-hopping journeys made by cancer patients to be part of a gynaecological trial. Not just occasionally, but every three weeks, motivated by a desire to improve the prognosis for all women.

Give or take the odd ferry there is not a world of difference between this ‘journey’ and that made by hundreds of thousands of patients in the UK who are taking part in clinical research this year (well, have you ever tried changing trains at Crewe?). Nor the fact that, for most people who participate in research, the opportunity only arises because of a conversation with a confident and well-informed doctor, nurse or health professional.

We need to get better at helping these conversations take place in our surgeries and hospitals up and down the country and increase the number of people in research studies. That’s why this year’s International Clinical Trials Day (ICTD) ‘Ok to ask’ campaign is so important. It’s the only national campaign for ICTD ever to have taken place around the world that I’m aware of and, I’m delighted NIHR is leading it.

‘Ok to ask’ is about empowering patients to ask their doctor about clinical research relevant to their care and treatment which they might take part in. It’s also about saying to doctors that it’s more than ‘Ok to ask’ patients about being in research. In fact, most people would like to be approached about opportunities as the results of last year’s National Cancer Patients’ Experience Survey (NCPE) showed.

Whether you are a patient, carer, doctor, nurse, researcher, charity CEO or interested member of the public, there’s many ways in which you can support the campaign. Just visit the NIHR CRN ‘Ok to ask’ website. And whether you are an NHS Trust, patient group or research team there are loads of materials to help support your conversation with patients.

Listening to the conference debate here this afternoon the prevailing opinion seems to be that Nordic clinical research is as becalmed as the small rowing boats on the fjord outside. I think they are being hard on themselves. But it is the sort of discussion we would have had in the UK five or six years ago. Not so now. Our own clinical research networks are the engine by which we are delivering every greater opportunities for patient’s to be part of research. Over 500,000 patients took part in research in the UK last year. By doing so they are helping to improve the quality of our health services in the future.

It all begins with a conversation. So let’s make it a national one.

http://www.crncc.nihr.ac.uk/oktoask

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The UK has a lorra lorra data and this is how it’s handling it in medical research Reply

Big Data, health informatics, patient data • Tags: , , , , , , , , , , , , , , , , ,

Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2).  Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research.  You can read the full report here and, in my view, it is sound on the use of patient data for research purposes. It is also good that the Government has asked her to lead the group that will monitor implementation of her recommendations.  They will need a firm but guiding hand that’s for sure.

The fact is that the UK has a whole lot of data – often called ‘Big Data – and the issue is how to get better at using it.

Today the Science Minister, David Willetts MP, opened a new £30M facility in Oxford called ‘The Big Data Institute’ (Do you think that they have signs up for visitors warning them not to bump into the oversize numbers walking through the lobby?).  Earlier in the week he also launched the UK’s four new e-Health Informatics Research Centres (e-HIRCs) and Network at a conference at the Royal College of General Practitioners (RCGP) in its new surroundings.  The four centres will be in Scotland, Wales, the North and London.

Their role: to make health informatics work for medical research and for patient benefit, to enable us to crunch the numbers so to speak and mould them into new pills or new ways of delivering care. They have a HIRCulean task ahead of them!

I was tweeting merrily from the conference on Wednesday afternoon because I was so pleased to hear the head of the Network, Andrew Morris, and the leaders of the four new Centres, Professors Ian Buchan (North), Ronan Lyons (Wales), Harry Hemingway and; Jill Pell (Scotland) all talk about the priority will be given to public involvement and engagement.  The proof will be in the eating of the pudding of course.  The danger for any network is that it becomes introvert and fails to grapple with the practical applications of what it is doing.

During yesterday’s conference proceedings I chaired two workshops.  In each, the question of people having access to their medical records cropped up.  Also how this might hinder or assist in improving the quality off data held about them.  The Government has said that everyone will have online access to their medical records by 2015 and that this is a non-negotiable for the NHS.  But the level of caution and nervousness in some corners of both workshops was palpable.  It is a little like listening to Euro-sceptics.

This is a shame because the UK has so much going for it when it comes to the knowledge, expertise and infrastructure it has developed just to make sense of the increasing amounts of data in our own health and social care system.  This and the very fact of 60 million + people sharing the same health service puts us in a remarkably advantageous position.  If only we could also embrace how patients could be partners in this whole project.  Our US colleagues would love to be able to work with a system such as ours.  However, they more than make up for it with the way they think about the citizen being at the heart of their endeavour.

Professor Sam Their from Harvard University put it best when he urged us to wake up to the fact that health system will be faced with a ‘more technically sophisticated, inquisitive and informed public’ than ever before.

……By the way, this seems as good a moment as any to remind people of the excellent ‘Your health record saves lives’ leaflet which was designed by the UK Clinical Research Collaborations (UKCRC) partners with patients and is available from here.  It explains how people’s medical records are used, gives some case examples of the benefits have come from it and talks about the risks and where you can get more information……

 

Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy Reply

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The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday.  I have to say I am highly impressed.  In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group.

Why is it so good?  Well, the research strategy is clear and visionary.  It seems to strike the right balance between basic research and clinical research.  But it’s more than that for me.  Most important is the firm commitment to ‘Enhancing the involvement of people with cystic fibrosis in shaping research’  as one of its three enabling piorities.  I also like their very simple but effective ‘SCORE’  approach to evaluating potential research ideas to fund. It’s about time more charities came out with similar focus and simple creativity.

I’m also pleased that CF Trust’s new approach to research is available to a wider audience using Cystic Fibrosis Unite among other devices. As I found out after I did the first (perhaps exciteable!) version of this blog CFUnite is independent of the CF Trust and funded by a Wellcome Trust People Award. But my excitement is not totally unfounded.

I love the fact that CF Unite embraces and pulls in all possible partners in making research happen – you really do want to be part of the enterprise.  On the CFUnite site you can register your interest to help design and take part in clinical studies.  And you can email them if you want to find out the results of relevant trials.  This is just the sort of thing we should be doing in the name of transparency and in the public interest.  You can find all these features here.

CF Trust complements this with its own cross-referencing and linking to CF Unite but also by giving people information on clinical trials taking place in the UK.  This is a facility that it has made available for some time and shows its long-term commitment to making sure this sort of information is in the public domain.

Its a worthy package that has made my day.

Bold ambition for lung cancer research just what the doctor ordered Reply

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I was delighted to see this getting considerable airtime on the radio this morning: the launch of the London Lung Cancer Alliance with its aim of recruiting 3000 lung patients into clinical trials per year.

Lung cancer is on the rise in the UK and it is a difficult condition for which to raise public awareness and funding, not least because of the misconceptions that people often have about the disease.  Stephen Spiro from the British Lung Foundation described it as having a ‘low level of resonance’ with the public in his interview on BBC Radio 4′s Today programme today.

Having spent a short time with a research funder yesterday as they contemplated the future, the London Lung Cancer Alliance is just the sort of medical research model I think is right for the future: collaborative, providing national coverage, clear about its proposition, bold in its ambitions and close to the patient.  The focus on the whole progression of the disease as well as a subject of inquiry is much welcome.

Alan Ashworth, the Chief Executive of the Institute of Cancer Research, London, has written a good blog on the announcement today.  It includes his own family experience with lung cancer.  At last, there seems to be more than a chink of light at the end of the tunnel for lung cancer research and people with the disease.

Could a non-scientist lead the MRC, Wellcome, or Royal Society in the future? 1

medical research

A little while ago I stumbled across a survey which said that 70% of the leaders of FTSE 100 companies had an accountancy background. In other words they were not necessarily bloodied in, or married to, their organisations core business. It makes perfect sense when you think about it. Their number one priority is to deliver the right numbers for shareholders and the stock market.

It got me thinking anyway. Could a non-scientist lead the Medical Research Council (MRC), the National Institute for Health Research (NIHR), or even one of our esteemed Academies one day? And, if not, why not? After all, the No1 priority of all these organisations is public benefit. So why not have a member of the public as leader?

A casual observer might also be forgiven for concluding that when science organisations have stumbled into problems the issue has often not been a lack of science expertise. The real issue has been a lack of leadership skills: financial acumen; the ability to build relationships and; poor communications. A lack of recognition that these positions are more and more ‘political.’ Perhaps that is the tale of the unfortunate recent history of the Royal Institution for instance, I don’t know?

Closer to home it is worthwhile reflecting that there continues to be a proverbial ‘glass ceiling’ which is preventing patients and the public from being co-applicants, reaching the boardrooms, or leading health research organisations.

In fact my impression from reviewing many research applications now is that our governance model for public involvement has got stuck on creating PPI ‘advisory’ or ‘steering groups’ like a needle on vinyl. Off-centre in terms of how the organisation is run they are in what scientists might call a controlled environment. I think we all know what that means from a public and patient perspective!

Yesterday I spoke at two events hosted by the West Midlands CLRN and Northwest London CLAHRC respectively. There was no shortage of ‘lay leaders’ in those rooms. In fact, in the case of the former the Director, Andrew Worrell, has no science background at all. But he was voted in unanimously by both his public and science colleagues. He remains the exception to the rule I am afraid.

Perhaps as our Academic Health Science Networks (AHSNs), CLAHRCs and Clinical Research Networks go through their various changes in the next year or so, we should be setting an expectation that they have a plan for public involvement in their governance.

As for the Royal Society, MRC and others I suspect we will still be waiting in another 100 years. That might be the right decision. But it would be a shame if they had not at least asked ‘what if..’ and considered the benefits as well as the downside.

Asking ‘What if’ is not a bad way to begin shedding the cobwebs in any organisation.

Keep track of your medicines with ‘My Medication Passport’ c/o NW London CLAHRC Reply

Academic Health Science Networks, CLAHRCs, medicines usage, medicines use, medicines waste • Tags: , , , , , , , , , , , , ,

I seem to be visiting more CLAHRCs (Collaboration for Leadership in Applied Health Research and Care) next week than in all my time as a boy looking for new school shoes.  One of the CLAHRCs unfortunate enough to be visited by me is Northwest London.

They’ve just launched a brilliant new tool to help patients keep track of medicine changes and improve communication with health professionals and others. ‘My Medication Passport’ is available in hard copy and can also be downloaded as an app on your smartphone.  The initiative is an idea that came out of the CLAHRC’s public involvement group and is already being used by 5000 patients across Imperial College Healthcare NHS Trust.

The ’My Medication Passport’ web pages are bursting with good information to accompany the launch including patient testimonials and a video.  Really, really good and just the sort of thing that has been emanating from CLAHRCs. Here’s hoping this blog can help a little in putting it in the hands of more patients for whom medication changes are a real care and safety issue.

Since we are talking about innovation the Guardian did one of its online discussion today, this time on the role of the Academic Health Science Networks (AHSNs). Panelists included Jonathan Sheffield from the National Institute for Health Research Clinical Research Networks (NIHR CRNs).  The discussion can be found here although those nice people at the Guardian normally do a summary too at some point.

New Zealand launches clinical trials portal for researchers and the public Reply

medical research • Tags: , , , ,

The New Zealand Government has launched its own clinical trials portal in the last few hours.  You can find it here.  This is the speech by the Minister for Health, Tony Ryall.  I have not spec’d the portal out but will be interested in the views of those who do have time to check it out.

It’s another example of the increasing international competitiveness between Governments among others over ‘point of sale’ websites that are aimed at increasing participation in clinical trials.  Scandinavian Governments have also recently announced launches soon and I suspect they will definitely not fall behind schedule in getting their own portals up and running.

Have a good day.

 

Life on Mars: Bowie sings about public involvement in research? Reply

medical research

This is for person who I recently met and said doing public involvement in research was like being on Mars: a set of specially commissioned lyrics I have written to the tune of David Bowie’s ‘Life on Mars.’

It’s a god-awful research idea
To the patient with the lousy deal
But the scientist is saying ‘Yes’
And the funders are paying for the rest
And the public are nowhere to be seen
As our friend walks
through the oak panelled room
To the seat with the clearest view
And they are drawn to the PPT screen
But the project remains a saddening bore
For they’ve seen it
ten times or more
Even the doctors beside her whisper it so
As they ask her to focus on

[CHORUS]
Molecules dancing on the microscope slide
Oh man!
Look at this team go
It’s the freakiest show
Take a look at this poor guy
Beating up the wrong path
Oh man! Wonder if he’ll ever know
He’s missing the best selling show
Is there life on Mars?

It’s on the panel’s tortured brow
That this project
has turned into a cow
Now they have a shot
To strike it lucky
At what’s on sale again
But instead they ask the million hordes
From Ibeza to the Norfolk Broads
Rule Britannia is even in bounds
What they need, what they want, and care about
For this project is a saddening bore
It’s been written
ten times or more
But it won’t be writ again
Now we’ve asked you to focus.

[CHORUS]
Dring-dring-dring……
[Mind the phone]

Last time I saw David he did confess that Life on Mars is actually about public involvement in research but that he couldn’t get the lyrics to work. :)

I’m off to the recording studio….

Blog: A citizenship test for UK health research? #patientleaders 1

medical research

Should it be an oath? A raising of the INVOLVE flag outside labs and hospitals each morning? A hymn perhaps? Or something to be carried on your person like an equity card?

Should there be a test? With questions such as how much public money is spent on health research each year? Or a vetting procedure? Maybe a metaphorical frisking (does that make sense?) would be easier and less costly? It certainly sounds a lot more fun.

These and other important matters of state have been preoccupying me of late. In part because identity, recognition and a sense of belonging have quickly risen to the surface as concerns of the public involvement community over recent years. Hands up, for instance, who thinks we are ill-served by some of our national and non disease specific so-called patient representative organisations for instance? (Both my hands are up).

But, more so, because in the health research world INVOLVE is leading a working group to tackle the issue of learning and development in public involvement. This is not a working group leading up to a report. This is group working to produce some tools for others to use. My erstwhile colleague and group member, Derek Stewart, has already started a discussion group on LinkedIn . INVOLVE’s web pages on our work will soon be live. 2013 is going to be a busy year on this front I can tell and I am truly excited about it.

Anyway, I’ve been mulling over a couple of things. In a sentence I think I think that: ‘there should be no bar to involvement, but we should set a high bar for involvement.’ And this applies to researchers as well as to patients and the public.

What do I mean? Well, we should be open and inclusive to newcomers to public involvement for that is how we grow our movement. But it doesn’t mean we can not set expectations around values and ground rules just as we do at the start of every INVOLVE meeting for instance. We want our citizens to be good citizens surely?

And that’s where the citizenship test idea came from. Yes, it’s a joke. And yet it’s also not a joke. What could we give every ‘entrant’ to public involvement to help them belong. How do we ensure they are able to contribute as much as they are willing and able?

Similarly, for those fulfilling formal public involvement roles. Or for researchers as they advance in their careers. We should be setting the bar ever higher for the skills and competences that they should be exhibiting when it comes to public involvement in research. To the very top and certainly future leaders of the NIHR and MRC.

And we should in time be appraising and supervising employees based on how they demonstrate these skills. It may not please some. But the time has come to begin to cultivate a cohesive workforce with clear leaders and leadership whose public service is to help deliver ever better public involvement in research organisations. Just as much as it is our task to nurture a wider people in research movement.

Ensuring that patients and the public are valued by and feel able to add value to organisations is how we future proof health research in the public interest. And it begins with how we support people throughout their journey or career path in research. For that reason I think what we do in 2013 in learning and development could be the start of something very big.

Run it up the flagpole .

Academic Health Science Networks (AHSN) map and tender details for new AHSCs Reply

Academic Health Science Centres, Academic Health Science Networks • Tags: , ,

I noticed a colleague had posted these on the Academic Health Sciences Network (AHSN) Linkedin group discussion site (you will have to sign in/register). So thought it would be good to share them with a wider public audience.  Particularly as I would have thought an announcement following the tender process is due shortly.

 An overall map of the AHSN territories has been provided by East Midlands AHSN at http://www.emahsn.ac.uk/emahsn/national-map.aspx

The prospective AHSNs are:
North East and North Cumbria http://www.ahsn-nenc.org.uk/
North West Coast http://www.nwcahsn.nhs.uk/index.php
Greater Manchester http://www.gmahsn.org/
Yorkshire & Humber http://www.yhahsn.org.uk/
East Midlands http://www.emahsn.ac.uk/emahsn/index.aspx
West Midlands http://www.ahsn.nhslocal.nhs.uk/
The Eastern http://www.eahsn.org.uk/
West of England http://www.weahsn.org.uk/
Imperial College Health Partners http://www.imperialcollegehealthpartners.com/
UCL Partners http://www.uclpartners.com/lotus/about-us/ahsn/
South London http://www.kingshealthpartners.org/info/southlondonahsn
Oxford http://www.oxfordahsn.org/
Kent, Surrey and Sussex http://www.kssahsn.net/#
Wessex http://wessexahsn.org/
South West Peninsula http://www.swpahsn.co.uk/

Yesterday, NIHR also announced the competitive exercise for the new Academic Health Science Centres (AHSCs).  These will be nested within AHSNs but they won’t provide full national coverage (there are currently five Centres for instance).  This extract from the guidance document published yesterday is quite helpful in explaining the distinction between Networks and Centres:

“AHSCs are distinct entities from AHSNs. AHSNs will drive diffusion and uptake of proven innovations throughout the NHS, and will provide full geographical coverage in England. As stated in

Innovation Health and Wealth, Accelerating Adoption and Diffusion in the NHS, “the designation AHSC is distinguished by its world-class research capability, clinical excellence, strong collaborative governance, competitive approach to management of IP, strong track record of productive research collaborations with the life sciences industry and emerging clinical data informatics platforms”. The designation of AHSCs will be made only to those elite NHS provider/university partnerships which meet such challenging criteria. It is not the intention that together the designated AHSCs will provide full national geographical coverage.”

Am delighted to see the reference to AHSCs needing to have ‘strong public involvement’ in yesterday’s public announcement.

Science must ‘get real’ not build high-altars in this spending review 1

medical research, spending review • Tags: , , , , , ,

Science funding is on the verge of getting a right good hammering in the US.

From afar it looks like the policy equivalent of the storms and twisters that each year cut a swathe along tornado alley running through the Mid-West. If you were watching on weather radar, this frightening picture would look like a large and very angry red blob moving across the screen in your direction.

In a sentence, the Budget Bill going through Congress would cut about £2 billion off federal funding of science as far as I can understand. But the impact is already being felt in universities, labs and patient groups up and down the land as organisations dial-down what they do in anticipation of a harsher future. The whole spending cuts process even has a name – ‘sequestration’ – which makes it sound like the Spanish Inquisition.

Take cover would be the best response of those on the end of this you might think. But, thankfully, Americans are not taking cover. In fact many are showing their passionate opposition to this, both visually and vocally. Just this week ResearchAmerica – one of the key lobby organisation – organised and lead a rally on Congress.

All this will sound familiar to the many of you who were involved with the Science is Vital campaign in the run-up to the last UK Government Spending Review in 2010. And I see the campaign has now revived itself to mobilise action ahead of the deadline for our next spending review which is 26th June.

Science is Vital Mk II seems a rather curious beast if I may so. In fact I sense the deadening of a few too many ‘ologies.’ The campaign call for UK Government funding to be increased to 0.8% GDP to match our international competitors is very specific and all the more odd because of it. Why? Because I can’t remember many successful campaigns with a decimal point in its slogan.

The concern with international competitiveness is absolutely right but can become a dangerous obsession. I recall that in 2010 President Obama was lauded here and elsewhere for his short-term stimulus package for science. I also remember one of our Research Council heads telling me at the time how dangerous it was. He, like many others, could see that after this seduction would come rejection for a great number of US scientists and their work. That looks ever more likely.

Solidity and sustainability were the watchwords following the 2010 spending review and they are worth heralding again.

We must also recognise the very fragile society around us. A few mornings ago I woke up to a strange juxtaposition of stories on the Today Programme. The first was about the argument over whether it is possible to live on £53 a week. The other was a celebration of the tens of millions extra being spent on the Hadron Collider.

Now I totally get the importance of building a pretzel shaped tunnel beneath Switzerland and during light around it to find participles. But I also understand how this might sound to the person scraping pennies together to find a few scraps to eat. And to their MP for that matter.

This is not a time to allow such things to emerge like high altars or catholic symbols of our firmly held beliefs in what science might do. Rather it’s a moment to get real in every sense of that word and, in particular, how this endeavour is utterly democratic in how it benefits society.

Blog: Alzheimer’s should be more than a footnote in Mrs Thatcher’s story #Thatcher 3

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Alzheimer’s disease is getting a reputation for its merciless pursuit of the political elite of the 70s and 80s.  Think Harold Wilson, Ronald Reagan and now Mrs Thatcher.  One hopes that some good may come of it; a doubling of the efforts to find a cure would be a most suitable legacy.

Of their passing from this terrible disease what can one say?

My recollection of the day that former Prime Minister, Harold Wilson, died (24th May 1995) is that his battle with dementia in later life was barely acknowledged.  A look at one or two obituaries from the time would seem to bear that out.  Dementia did not even merit a footnote.   On the other hand these tributes did rehearse the speculation at the time of his resignation in 1976 about his growing ill-health and its impact on his formidable memory.  One very good reason why dementia was not referenced at the time is that his family never publicly acknowledged it. Or not as far as I am aware.  Only in the past few years has his wife, Mary Wilson, talked about it and movingly so.

A sign of the times. Or not.

Only the year before – on 5th November in fact – former President Ronald Reagan had publicly disclosed that he was suffering from Alzheimer’s disease.  Ever the showman, I think he would have liked the fact that his announcement coincided with fireworks night.  In fact he probably would have done it deliberately if he’d known.  The personal message he and Nancy sent to fellow Americans at the time is worth reading.  It is hard to convey the seismic impact their statement had at the time for the many families who had cared for or were caring for someone with dementia.

Loneliness is one of the first battles we must all confront with any illness not just dementia.  Having someone else out there who ’we know’ and who is suffering from the same thing as us can bring considerable comfort.

So it was dispiriting how judgemental and disapproving commentators were when Carol Thatcher talked about her mother’s illness in 2008.  Similarly the reactions to the sympathetic if premature portrayal of Mrs Thatcher in the ‘The Iron Lady’ starring Meryl Streep.  It is also a little hard to put one’s finger on quite why this should be.  British reticence?  A modern inabillity to deal with the passing of life?  A dislike of talking about illness?  Pomposity?

The upshot is that while Mrs Thatcher’s dementia has undeniably been acknowledged by in the British media’s in their coverage of her death, it has only been in passing. Or so it feels to this writer.  Curiously it is the foreign press who have focused more on her condition than their colleagues here at home.  And they have done so to ask interesting questions about stigma, the under-reporting of the dementia and how ill-health is an important part of each of our stories?  Surely there is nothing disrespectful about reporting it as fact but also about using it as a means to open up a discussion about something which affects millions of people across the world.

Still there is time for this to happen I suppose.  So far the coverage feels all too familiar in its effortless and unthinking combination of the pre-prepared and the reactive – all at 100 miles an hour.  I have no doubt that the best and most reflective pieces of journalism will come in the weeks ahead and that this is perhaps where Mrs Thatcher’s cognitive decline will receive appropriate treatment and for constructive reasons.  The Prime Minister – who did not mention Alzheimer’s disease in his tribute yesterday – also has an excellent opportunity to invoke Mrs Thatcher’s memory for the common good within the context of his own Dementia Challenge.

Maybe, just maybe, there is another chapter to be written on Mrs Thatcher’s legacy yet.

*       *        *

If this blog reads like a criticism of any of the families mentioned above then I am sorry, it is not meant to.  It is a personal reflection prompted by my own experiences personal and professional with dementia over many years.  All families make choices and who am I to judge.

Here is the Alzheimer’s Society statement on Mrs Thatcher’s death.

 

Music Exposure Study: Please take this quick test + help us learn how music affects l/term hearing Reply

medical research • Tags: , , , , , , , , , ,

Not often that I do this but this important ‘Music Exposure Study’ study is looking for thousands of volunteers and I thought I would help….Please take part and also retweet.

You may have seen this hearing impairment study announced earlier last year.  Researcher, Rob Mackinnon, based at the NIHR Nottingham Hearing Biomedical Research Unit is looking into the effects of exposure to loud music on our long-term hearing.

Robert is quoted in the article on the University of Nottingham website linked-to above that: “The results of this study will not just be used to help answer the question of if  music exposure is damaging, but how much it is damaging. This will allow us to begin to better define safe listening limits — prevention is better than cure.”

In his email to Robert added: My PhD project needs people aged 18-65 who speak English to a native level and don’t have a cochlear implant to participate. It is investigating the effect that loud music exposure has on our hearing. It involves doing an online hearing test and an online questionnaire. It doesn’t matter if they have a hearing loss or not, nor if they have loud music/noise exposure or not.

YOU CAN TAKE THE TEST HERE

OR HERE.

All you need is access to a PC.

You’ll also be doing me a favour as I develop plans for NIHR for doing more of this sort of study online and using social media…more news on this later

 

It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients Reply

NIHR • Tags: , , , , , , ,

Yes, it truly does seem as though Friday should be dubbed ‘NIHR Friday’ given the propensity for my erstwhile colleagues to push info out on the aforementioned day.  The clutch of interesting announcements this week include:

Publication of the NIHR Annual Report for 2011-2012.  You know, I’m sorry if this offends some people but I’m proud of what the UK has created in NIHR and I’m proud that I work for it.  I’m also proud that a publicly funded organisation should be arguably the world’s leader in its support for public involvement in research.

I’m only part of my way through these but you can view the 21 entries to the NIHR New Media Competition and vote for your favourites by pressing the ‘Like’ button as and when.  The aim of the competition is to create videos that will enthuse people about research.  Loving their work so far.  You need to vote by April 30th and the winners will be announced in early May.

The NIHR Central Commissioning Facility (which is like the organisational Michael Grade of NIHR) has just published its patient and public involvement plan for 2013-2015.  And very good it is too.  In an exclusive email to me (not!) CCF say: ‘Over the next two years, we will be looking for some of our public contributors to get involved in helping us to develop and deliver projects in the Plan. At this stage, it would be useful to identify public contributors willing to express their interest in this process. Initially this would commit people only to joining an email distribution group that we would then come to for input as we begin to develop the delivery of projects and activities in the Plan.’  More details on the website.

And, any time after about Wednesday next week, I guess ‘It’s ok to ask’ about International Clinical Trials Day and some of the plans for that.

Enough already.

 

Dear
Colleague

As a public contributor to the work of the Central Commissioning
Facility (CCF), I hope you will be pleased to hear that we have just published
CCF’s Patient and Public Involvement Plan 2013 to 2015.

The Plan is
available to download from our website along
with a report of the consultation that took place in January 2013 and a
background report. (If you would prefer to receive paper copies of all or some
of these documents please email me, philippa.yeeles@nihr-ccf.org.uk,
with your postal address.)

Over the next two years, we will be looking
for some of our public contributors to get involved in helping us to develop and
deliver projects in the Plan. At this stage, it would be useful to identify
public contributors willing to express their interest in this process. Initially
this would commit people only to joining an email distribution group that we
would then come to for input as we begin to develop the delivery of projects and
activities in the Plan.

If you wish to be part
of this distribution group please do not reply to this message but instead email
me: philippa.yeeles@nihr-ccf.org.uk.

If you have any questions or queries please don’t
hesitate to get in touch.