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Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends?

Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013

Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense

Help us beat cancer sooner – Cancer Research UK cinema advert late 2013

In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14

We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust

Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14

Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home

Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer

These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube

I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action

Macmillan Cancer Support has today drawn attention to the negative impact of ‘fighting talk’ on people living with cancer.

The charity says the findings of its latest survey show that people find it more difficult to talk honestly about their experiences because of the pressure they feel to be positive. One in four people said that they feel guilty if they don’t stay positive about their disease. The problem is that this can get in the way of them having conversations with relatives and health professionals about their end-of-life preferences.

Macmillan’s survey and report is long overdue .  For as long as I can remember, patients and families – coping with all manner of diseases and conditions not just cancer – have expressed disquiet about the language – and let’s be frank it’s often the language of war – ‘fight,’ ‘battle,’ etc. etc. – that is used and how it makes them feel and behave. I suspect it also causes friends and family to say and do things which feel equally unauthentic.

Similarly society has become dominated by messages about health care and medical research that continue to emphasise ‘cure’ over ‘care.’  Quantity versus quality of life is still the premium product if we are to believe the advertisers and fundraisers.  If you don’t believe me you may wish to check out these charity slogans I collected some time ago.

While I understand the imperatives behind this, the growing gap between people’s lived experience and the experience they are being told they should have is a cause for concern.  Perhaps it is what motivated the graffiti artist in Bromley who I noticed a few months ago had angrily scrawled ‘It’s all lies’ across just such a slogan on a billboard by a very well-known charity.

Let’s hope today’s report causes charities, health organisations, research funders and others to pause for a moment and think carefully about the language they are using in their fundraising and advertising.

A bit of ‘care’ would not go amiss.

 

The charity Pancreatic Cancer Action have caused a storm with their new ‘cancer envy’ advertising campaign in which patients are pictured saying things like: ‘I wish I had breast cancer.’

So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted.  As must the advertising company most of all. Job done, they will be saying I suspect.

One can understand the temptation for charities to go just that little bit further in making us sit up and notice.  More charities than ever before are competing for yours and my funds. They are, I believe, genuinely motivated by a desire to make sure potentially life-saving messages get through to us.  But do the ends really justify the means?

I can remember two occasions in my charity career when judgement calls needed to be made about advertising.  At the Alzheimer’s Society in the mid-nineties the staff recoiled at a proposed advertising campaign showing a brain scan with the slogan ‘It blows your mind.’ But when tested with people with dementia and their carers they loved it. They felt that the time was right to shock people a bit. So we ran it. All seems a bit tame now twenty years later.  I can’t even find the posters on the internet.

More recently when I was at Ovarian Cancer Action I looked at some proposals for a ‘shock’ advertising campaign and would have probably signed on the dotted line if I had had a choice.  But I was persuaded otherwise by colleagues.  Looking back, they were right and I was wrong.  There was little evidence to suggest there was the appetite among patients and carers for such a message at that time.

The reason for telling these stories is simply to make the point that – as with much else in running a charity – things get dangerous once you get too far ahead, or too far behind, your beneficiaries and how they think and feel.  To be fair to Pancreatic Cancer Action it does sound as if people with pancreatic cancer have been involved in the campaign.  They feature in it at least anyway. The founder Ali Stunt makes this point in her blog about the campaign yesterday. Although the fact that -as far as I know – other pancreatic cancer charities are not clamouring to endorse it might suggest that they are hearing otherwise on the ground.

On This Morning earlier today, the resident TV doctor, Dr Dawn, said the controversy about the campaign was based on a misunderstanding of its message.  The charity is wanting people to go to their doctor with possible early symptoms to get them checked out as possible.  Fair enough.  But if the message is being obscured by the medium’s ‘shock tactics’ then I would say the campaign is failing in its objectives.  I could understand it a bit more in a strange way if it was a cool fundraising pitch but not as a health improvement campaign.

I do agree with others that the charity has crossed the line into quite dangerous territory in which we are being asked to consider whether one disease is nastier than another. Is that really what charities want now? As Breakthrough Breast Cancer have said today: ‘It’s not a competition.’

It’s a matter of judgement at the end of the day.  And I am no Mary Whitehouse.  But in my opinion the charity has made the wrong call.

I just hope it’s not counterproductive in the long run.

There’s a big push on #patientdata at the moment.

Leaflets explaining how patient data will be shared in the future are being stuffed through people’s letter boxes.  This is part of an initiative called ‘care.data.’

Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The ‘ad’ shows the face of a boy with the strapline: ‘Hello, I’m Peter: We haven’t met before but one day you could save my life.’

In marketing speak both initiatives – although more the former than the latter – have been accompanied by ‘noise disturbance.’

This includes some very valid criticisms of the leaflet and the way it has been delivered.  The inevitable spoiler campaign.  Not to mention the usual misinformation being reported and repeated without challenge.  Some of the news articles I have read leave you with the impression that sharing data is an entirely new activity across health and social care.  It is not.  What is changing is the way this is managed; for the better in my opinion.

Yet I am torn.  There is that part of me cheering the fact that our health service is making a concerted effort to engage people about data after years and years of dragging its feet.  Thank goodness we have begun to share the data dilemma, and everyone’s role in tackling it.

Then there is the communications professional in me that can tell you – without a shadow of doubt – that direct marketing and national newspaper campaigns are blunt instruments that rarely result in public understanding.  Unless repeated.  Unless part of a bigger and more varied campaign.  Unless pursued over the longer-term.  I read somewhere that the recall rate for national newspaper ads is something like 1 in 5 people and lots of variables drive how high or low that figure is.

I fear I sound churlish but my point is a simple one.

I applaud the campaign.

But we are going to have to work harder at this if we want the noise disturbance to subside into something more harmonious.  And that includes supporting regular conversations with patients and carers in those settings where the importance of sharing their data will feel immediate and personal rather than distant and impersonal.  As well as reminders at key points in their life.

My son just got a birthday card from our local football team – why can’t the NHS contact people when they reach the age of consent to tell them why the NHS is there, what it offers and their responsibility to it?

In the meantime you may find this piece by Dr Geraint ‘Big Data’ Lewis at NHS England helpful.  As well as this excellent graphic from Cancer Research UK about the benefits of sharing data from a research perspective.  I must say, despite CRUK being a monolithic organisation, I am feeling more positive by the day about how it is thinking about public involvement and engagement.

The moral case for public involvement in research is dead, long live the moral case…..

‘I was so angry when I found out how much money was being spent on Multiple Sclerosis research but how little patients and carers had been asked about how it should be spent,’ said my friend and colleague.  She was talking about the spark that lead to her own personal history of involvement in research.

I mention this because, at the moment, I quite often begin my talks and presentations with ‘why’ we do this thing called public involvement.  You can see the latest version of this presentation which I gave in Canada last week here.  The five ‘whys’ I focus on are in the picture below.

Why public involvement

I often talk about how these ‘whys’ are in the ascendant for many organisations now – over and above the moral case which perhaps dominated before.  But my friend’s comment is a timely reminder that morality is alive and well in this debate. Thank goodness.

In fact, for most of us, isn’t it the hand that pushes us away from the shore to begin our public involvement voyage?

 

Sometimes in life you look back and wish you had stuck to your guns and withstood the utter humiliation you felt at the time.

I had one of those moments last night when reading The Sun’s despicable and misleading headline about mental health.  It reminded me of an encounter I had ten years ago almost to the day.  This was in the wake of The Sun’s climb-down over a not dissimilar front page story about Frank Bruno being admitted to psychiatric hospital.  By the way, if you want to read a well-researched news report about today’s story I would recommend Channel 4 here.

So returning to a decade ago….

‘It’s a seminal moment in the changing attitudes of the press to mental health’, said the mental health charity CEO at this particular meeting. Or something like that. ‘Not it’s not’ I said.  I then tried to argue that it would take more than an apology to mark a shift in attitudes.  I was quickly put in my place which sort of put an end to my part in the meeting.  I used to worry about these sorts of personally crushing moments endlessly.  Now I just try to put more of my life in print…..

Not that I am trying to either claim ‘I told you so’ or that another outcome would have made any difference. No, far from it.  All my tale proves is that leopards can change their spots faster than the media change their practices.  To put it into tabloid language: ‘The Sun has got form.’

What with this and the recent outcry about offensive Halloween costumes on sale in various stores; we can be forgiven for feeling  defeatist about the lack of progress we have made in fighting mental health stigma.

On the other hand perhaps we should feel encouraged by the universal condemnation of The Sun today; that this has come from well-known public figures – from politicians to sports personalities and charity CEOs.  Also by the fact that we have a new and powerful tool at our disposal with Twitter, by which we can spread the word and galvanise a response so much faster than before.  I noticed that some of the critical media coverage has got an astounding number of ‘shares’ – 1000 in the case of The Independent for instance.  These signals do not go unnoticed.

I am sure better people than I are mulling over all sorts of possible responses to The Sun:  a clarion cry for a public apology by the editor (at the minimum!); a boycott of the paper on World Mental Health Day; writing to The Sun’s editor; urging advertisers such as Tesco, TalkTalk, Sky and many others in today’s paper to give over their advertising space over to mental health charities; the Prime Minister refusing access to lobby briefings by the paper until it changes its editorial policy and speaking out publicly against the article on Thursday.

It will be interesting to see what the morning brings if anything.

My own personal view is that there is one effective response within our grasp – each and every one of us – which can effect permanent change in the long run.  That is, to turn our own individual outrage into positive action.  Whether by supporting the ‘Time to Change’ campaign or by support World Mental Health Day on October 10th  this year which focuses on mental health and older adults.   You can find out how at the Mental Health Foundation website here.

Fact is, making it personal like this is the only way we are truly going to end mental health stigma.

Here is a gripping report from this week’s ‘Adweek’ (based in New York) about the new marketing strategies being used by pharmaceutical companies.

Don’t be put off by the reference to ‘Obamacare.’ The story is equally applicable to the United Kingdom.  For it is essentially a tale about how disease is being re-packaged. Patient data is the new currency, social and digital media the marketplace.  Companies are no longer selling potions and pills but offering an all-round ‘service’ to patients and health professionals.

The speed with which the private sector can move in this way is dizzying (I thought I was doing well this morning by getting someone to agree some terms of reference!).  The sums of money at their disposal, mind-boggling.  In fact, the implications of what is happening can feel overwhelming.  So much so that it is easy, all too easy, to put on one’s ‘Blockbuster’ voiceover just to up the threatening atmosphere.  Yet who isn’t chilled to the bone when a commentator can glibly say in print:

‘For years Lilly has owned diabetes.’

Has anyone told people with diabetes and their families this?

I am sure that many patient advocates will be worried by the scale and speed by which these new approaches are heading our way.  But we seem to be in a collective state of un-readiness for this latest chapter in the marketization of health or selling sickness.  Or are we just complicit?  Either way it makes the work of organisations such as ‘Selling Sickness’ or Sense about Science as well as advocates such as Margaret McCartney  who are calling attention to these trends, all the more important.

How will patients be able to source independent advice when the market is smothered by ‘Trojan horse websites’ or apps backed by pharmaceutical companies? How will they be able to identify truths amidst this morass? Can regulators realistically be expected ‘protect and promote’ the public interest in the digital age using the same carrot and stick approaches that have failed in the past?  We have barely begun to think through the consequences.  Let alone the solutions.  And yes, these have to involve the companies themselves.

The danger is that we continue with our obsessions about things like the best model for lay reviewing when such bigger changes are afoot; we can only stay entrenched in land wars about whether something is public involvement versus participation versus engagement for so long surely?  Let’s not allow ourselves to become so tamed within our own boundaries that we lose the art of thinking beyond them and tackling new challenges?  Otherwise it will all be over when we finally do wake up.

In the meantime, we should remember, there’s no such thing as a free app….

Click here for details of a National Institute for Health Research (NIHR) and Association of British Pharmaceuticals Industry (ABPI) joint conference on harnessing big data for health gains.  Takes place in London on 21st November.

The more it is used the more I dislike the term ‘big data.’  I mean, how to alienate your public in one go.  That’s why companies no longer use the word ‘big’ in advertising or references to inanimate objects. Hey ho.  I will be on the panel in the afternoon trying to put a human face on data.

Funnily enough on, the ABPI page listing this conference, they also have their statement on the House of Commons Science and Technology Report on Clinical Trials.  Here’s my blog on that report.

ABPI/NIHR Data conference

Some of you may have noticed some twitter traffic over the weekend about participation in clinical trials being advertised as job opportunities on Universal Jobmatch.

Thanks to @celticchickadee for alerting me to this by the way.

Anyway, colleagues at NIHR have followed up, the posting has been removed and this is the official line from the Department of Work and Pensions:

A DWP spokesperson said:
“These postings are inappropriate for Universal Jobmatch and have been taken down. When advertising jobs on Universal Jobmatch, employers have to agree to a number of terms and conditions to use the service. Where an inappropriate job is identified, or where an employer doesn’t adhere to the terms and conditions, it is quickly removed.”

Good to see the wheels move quickly on this.

It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless.  An occasional spot of rain found its way on to the floor; a steady hum of a/c units was never far away- contented hives.

Taxis cleared their throats like Uncle Sam on his porch as they lumbered away from the side-walk. An occasional police car whooped its siren to move along a throng of other waiting cars. Porters hovered – there is always someone ready to help you in the US.

I had forgotten what it was like to arrive in an American city in the summer. How every sense is conquered.

Looking up I saw the signs asking us to join American Airlines in supporting the American Cancer Society in its 100th anniversary year. I remembered the interview in the in-flight magazine – between the CEOs of the two organisations.  It had a strong message of hope for cancer patients; particularly the graphic showing the percentage of people surfing cancer compared to 30 years ago. Research was key they said. But at the same time I couldn’t help ruminate how like business major charities and foundations have become in their ‘speak.’

As I sat in the back of the cab, Prince’s 1999 gave way to adverts on the radio. The first called for young male volunteers for a clinical trial being run at the hospital; reimbursement was possible it said. But, in reality, in tone and style it sounded no different to the next which was announcing a bargain sale if sofas. Or the next, advertising places at the local school. The cabbie himself had a small sign on his back seat asking us to support diabetes research? I saw a girl playing in the street and wondered if he had a daughter with diabetes and that’s why he was asking. I should have mentioned it.

Billboards and advertising hoardings buffeted and stretched for mile upon mile like one of their great freight trains. On each Freephone numbers spell out what they will say to you say on the phone. So an injury claims company’s number to call is: 1-800-HURT. I love that.

As the freeway rose on stilts heading into downtown, it curved around the new university hospital complex. ‘Health Sciences Centre’ said the sign on one of the tallest buildings and in letters the size of a small house.

Here’s a country not shy of talking about its science I thought.

It is Rare Disease Day today, 28th February. There is a lot happening and you should check out the Rare Disease Day website for more info http://www.rarediseaseday.org/article/what-is-a-rare-disease .
I’ve already been impressed by the number of NHS organisations tweeting about stuff they have got going on.

Last week I attended a really great meeting on paediatric rheumatology organised by my good colleague Sharon Douglas (@sharonldouglas) from the Medicines for Children Network (MCRN). This brought together parents and charities in the field – which covers many specific and very rare conditions such as Behcets Syndrome or Scleroderma – to discuss common issues and priorities for the future.

To mark today in my own sweet way I thought I’d share my verbatim notes:

– subjects v participants
– knowledge gap/low research awareness among parents and families – commitment needed to take part in a clinical trial
– there is not a lot going on/funding
– attitude and awareness of doctors
– Difficult journeys
– Being taken seriously
– fear over risks in research/side-effects
– what happens when the trial ends
– inexperience in dealing with research/lack of accessible information/understanding research procedures – publication of research results more widely
– peer/community support – communication issues
– culture of openness
– language and understanding gives confidence
– perceived power base of medical profession
– access to information
– regulatory barriers to advertising of research

I hope the notes convey the fact that while many rare diseases may appear ‘small islands,’ there is much that is common to them all. And that this commonality not difference should be the focus of Government and policy-makers in changing the prognosis for rare diseases in the future.

[written on my train to Leeds]

I get the feeling that this might not go down well. But I noticed this on the ‘wires’ this evening and you really have to say: ‘why not?’

The New Zealand Government is launching a $1million advertising campaign next month in which the public will be asked to help identify the scientific challenges which should be focused on. The top ten ideas will become part of their National Science Challenges initiative which will receive $60 million over the next four years.

The relatively small amount of money belies the refreshing thinking behind it. It is an idea which raises its head above the parapet here occasionally but I fear we lack the gumption to do it. But we should. (Reverb my thoughts from last week about ‘Science and Society’ – isn’t this just the sort of thing it could be doing?).

If you are looking for a good summary of the changes to the NHS reforms as outlined by David Cameron yesterday then the BBC Online piece is worth checking out.

To me, Cameron’s speech seemed to set out a fundamental re-balancing of the reforms to ensure they reflect a much broader set of constituency interests. Thekey announcements were those which suggest the new modus operandi of Monitor – the economic regulator – will be patient interests and the idea of clinical ‘senates.’ However, the cynical among us will surely remain unconvinced that they are anything more than a re-branding and I can see why.

For the five overall pledges set out by Cameron on the NHS are less impressive.

There is nothing wrong with them as guarantees but they are 100% ‘political’ rather than ‘practical’ It will be hard to ever prove conclusively that the Government has failed to meet them in the coming years. And they provide no real benchmark by which to measure the impact of policies to come.

Whatever your view, let’s just say that the Prime Minister successfully found safe harbour yesterday. But at some point the flotilla of reforms must leave port again and demonstrate that they can float on the sea of public opinion. So I expect all Government hands will be on deck next week when they set sail, to not only convince us this is the case, but to also convince critics that the Coalition has settled its differences on the design of this flagship policy…..

Re-branding is much in my mind for all sorts of reasons right now. A good colleague of mine who I bumped into at last night’s Wellcome Trust 75th anniversary dinner even suggested that, now I am now no longer ‘mainstream,’ I might need to do a makeover on myself. That £70 facial at Shoreditch Cowshed on Sunday morning was clearly a waste of time and money then?

And then I recalled a half-hour encounter with the advertising guru Wally Ollins many years ago in which he dressed me down on the fine art of re-branding and what it actually means – substance over style.

Indeed it was fascinating to see the approach of different research charities to re-branding in my last year at AMRC and the trends that were emerging – the concern to own not just a disease name but also the ‘UK’ badge. For instance, if you know your stuff, you’ll know that there are three ‘ARUK’s’ wandering across the medical research charity landscape alone because of this. Thankfully most have done so with good cause and reason – and that’s all we ask for, substance over style.

And that’s all we’ll be looking for from the Government next week.

Those who visit this blog regularly will know that we’ve been following progress with the plans to build the UK Centre for Medical Research and Innovation in London ever since our first post.  So, in what feels like an early Christmas present for science, it is good to be able to report that yesterday Camden Town Hall councillors gave their go-ahead to the project. 

 The Wellcome Trust has a straightforward press notice on it (they are one of four partners involved, the others being Cancer Research UK, UCL and the Medical Research Council) but I can highly recommend the UKCMRI website as well where you can get a better idea of what the centre will look like and what it will do.  Let’s hope the new centre will be snowproof unlike the rest of London.

In other news this week..this hasn’t been picked-up very widely but the Prime Minister’s Office announced the membership of the re-constituted Council for Science and Technology which was set-up in the early nineties (and re-launched in 2007) to advise the PM on cross-cutting issues of strategic importance.  The Council is also advertising for ten independent members.

Thw word is that Monday looks like the day when the Government will announce the science budget allocations…and I also hope that we can publish our independent report of the AMRC/INVOLVE patient workshop on research regulation.

An email popped into my inbox last night advertising yet another conference aimed at helping, guiding, supporting charities and other organisations survive, weather, capitalise on the recession, economic downturn, credit crunch.   The terms are interchangeable of course.  But you won’t have much loose change left afterwards that’s for sure.  The invitation I got yesterday cost over £400 for a place.  Ridiculous if not laughable.  I hope no one goes to it.

I suppose it’s inevitable that someone, somewhere was going to profit from the gloom but it does worry me that people  are paying an awful lot for information which actually falls well short of the far superior advice not to mention mutual support and links to networks that you can gain from being a member of an association or representative body such as ours.

Yesterday I had lunch with a colleague of mine and we got talking about membership associations and their value (yes, I am one of the most interesting lunch companions imagineable!). 

Without doubt, one area where AMRC adds value is in representing the sector’s voice to Government – or others for that matter – on specific issues or concerns.  Another is the credibility-gain that members get from being able to tell those they work with as well as their supporters and donors that they operate to the highest standard in allocating their research funds as set-down by the Association.

But, in difficult times such as this, it is the 1:1 help and support that member charities can access which increases in value.  And I think the model by which AMRC does this, is – and has to – change fast to meet the ever-changing needs of members.  So, gone are the days when our services might be expressed as a simple exchange akin to buying goods in a shop.  What is actualy happening is that charities are coming to us in the hope that we can provide a drop-down menu of options or choices that might lead them somewhere they had not thought of before, which helps to open up new opportunities. 

A simple and perhaps not very good example.  Yesterday one of my members visited me to see whether AMRC could help them get a couple of speakers from the MRC and NIHR for a meeting they were planning about research funding.  Talk soon focused on the need for them to build a wider coalition of voices to press their argument more effectively.  But they needed help to identify other charities they could work with.  By looking at our grants database we were able to give them the names of four or five charities they could approach about joint-working.  And after much further conversation it became clear that their strategy thus far had not involved industry.  Yet they already had good links with industry in other aspects of their work but had just not had the space to think how they could use this partnership in support of their research.

Making connections is perhaps a better term but it doesn’t make such a good headline for a blog (see above).

And yes, we still do conferences.  In fact our 23rd AGM and Conference including sessions on public and patient involvement, collaboration in a recession, and with broadcaster Geoff Watts as our guest speaker takes place on 21st October 2009.  And it’s free.  How good is that?