Sense about Science

It’s worth noting this new report by Sense About Science published today. Entitled ‘Missing Evidence: an inquiry into the delayed publication of government commissioned research,’ it uncovers a quite staggering degree of ignorance within many Government departments about the policy research they have or have not commissioned, its status and publication. Over £2 billion worth!  It also raises questions about the timing of such research and the degree to which this is being manipulated for political means.

The inquiry was chaired by Sir Stephen Sedley and approached with characteristic forensic thoroughness by Sense About Science.  The result is an absorbing and often disturbing read.  I found the list of departments and how they responded to requests for information particularly interests.  Thankfully the Department of Health comes out well in it.

The irony will not be lost on many of us  that for others – such as the Home Office or Department for Business -it seems ok to spend millions on research but not have the foggiest what happens to it.  But it’s not ok to spend money on collating and providing information about this information because it would be too costly. This in the era of supposedly open Government.

Go figure that one!  Or maybe the Treasury will next time there’s a spending review.

Sense About Science are also keeping a Storify going of social media coverage if you are interested.

Off to Liverpool today. I am chairing a session at the Pancreas Society’s first ever PPI forum. This is the opener to their annual scientific meeting which takes place the rest of the week.

Last Friday was another first. I spoke to, and took part in, the inaugural meeting of the MHRA’s ( Medicines and Health Products Regulatory Agency) patient group consultative forum.

Is that the sound of broken shards from a glass ceiling I can hear beneath my feet? Let’s not tempt fate eh?

What else connects Liverpool to our drug regulator?

Well, just a few days ago in Liverpool, the Medical Research Council (MRC) and Sense About Science launched a new public guide on drug safely entitled: ‘Making Sense of Drug Safety Science: Investigating the science of side effects.’ And an excellent publication it is too in talking about side effects and how we are doing more to learn about them. You can find a copy here: http://www.senseaboutscience.org/pages/health-and-medicine.html

But there is more to this issue than increasing public understanding and awareness.

In my experience, drug safety is one of those issues where doctors, researchers and patients are a long way from reaching a satisfactory working relationship.

At root is the clash between ‘scientific evidence’ and ‘patient experience’ with the validity of the latter often disparaged. Typically this is couched in terms of ‘the hierarchy of evidence.’ It is an argument intoned with the same sort of words and feeling that we used to hear from members’ clubs about why it was necessary to exclude women.

We had such a question about ‘evidence’ versus ‘opinion’ to the patient panel from the floor of the ABPI conference last week. I also heard those arguments played out at the MHRA meeting but thankfully with good grace and a willingness on both sides to listen. The resistance to listen and respond is the jagged edge of regulation on which patients often cut themselves.

I am not sure that any patient or patient group is seriously trying to unseat the place of science in regulation. But I do hear them urge that regulators use different instruments according to the environment and context – as pilots do when flying in good weather or bad – to allow the patient voice to be heard more clearly. The same goes with doctors.

If seems foolhardy to me if regulators and the professions do not embrace the ‘informal’ yet undoubted richness of conversations that patients have about their medicines. And we have already seen with some drugs such as statins how the patient voice has been critical in changing practice and attitudes. Or in devising new tools like the medication passport developed by the North West London CLAHRC. If only the system might turn to such creative minds to develop a more patient-friendly yellow card system for reporting adverse events. We might get rid of forms for a start.

With vision we might see patients as an integral part of the regulatory system for improving drug safety. Not the inert mass to be protected.

Yes, regulation might just be the thing for them to cut their teeth on.

At least we are now at the table.

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….

Looking forward to the TalkScience@BL event at the British Library tonight even if I’ll have to leave a little early.

Tracey Brown from Sense about Science is a great speaker and it won’t be long before ITV will be doing ‘an audience with’ as opposed to ‘discussion with’ her, plus the Patients Participate! project partners – the British Library, UKOLN and Association of Medical Research Charities (AMRC) – are launching the findings of the feasibility study they have been doing on crowd-sourcing over the last seven months.

Don’t forget to check out Sense about Science’s excellent ‘Ask for Evidence’ campaign. Click the image below for more info.

 

I get grumpier as I get older. Fact.

Some things I have only recently become grumpy about. Like trolley bags; the fact that their owners always stop at the top of moving elevators trailing their bag in everyone’s way as if it has suddenly been rendered immobile by a tranquilliser gun.

Other things I have been grumpy about since an early age. Like ‘project management.’ I have a distant recollection of a rather misguided HR professional booking me onto a two-day Prince 2 (that’s a project management tool don’t you know) course some years ago. After a brief period in which I broke out into a cold sweat, I rather astutely manufactured a full diary.

I quite like project managers though who, for me, are on a par with Brian Cox or the other great minds of our time. Ok, hands-up, it’s that they save me the worry if I am honest.

This is a roundabout way of getting to the heart of the matter of course.

Finding the best way of getting good quality information into a patient’s hands will forever be a conundrum. My advice to anyone about to devise health information with a patient audience in mind is to get patients involved from the start in refining the message, deciding the best way to deliver it, and in its actual dissemination. And with so many ways to get information out there, rarely is one method or means of communication enough to reach who you want. Sorry if that’s news to you but it is true.

Guiding patients to the right information when it is out there is another matter. I subscribe to the school of thought that, by and large, patients tend to vote with their feet in getting to the best sources of information and that they will use a range of ways to point them in the right direction with health professionals and fellow patients being key. Sure, the crowd might initially get it wrong, but it will often pull itself round to the right place in time. I know, that does rather betray the liberal instinct in me doesn’t it?

The evidence that they might be persuaded by a quality mark or kite-mark – while theoretically plausible – is slim.

I say this because I notice that the Information Standard has recently been doing some PR about where people go for their health information. The subliminal message behind this PR is that by looking for the Information Standard ‘mark’ on, say, a charity website, patients can quickly find their way to the best information because it has been quality assured by them.

The Information Standard has its origins in a Department of Health consultation many moons ago, since when a not inconsiderable amount of money has been spent to set it up. Charities can now spend a bit of money also to get what they do tested by the Information Standard and, if successful, carry the Standard’s ‘mark,’ Sounds good doesn’t it. But I hope that one day there will be some evidence made available for how influential it is in determining where patients go for answers.

Above all it is important to recognise that the Information Standard quality assures the process by which the information is put together, rather than the information itself. The two are quite different as I am sure you will appreciate. And while I would agree that the better the process, the more likely what comes out is good, it is no guarantee.

On balance the Standard is not a bad thing at all, but forgive me if I see it as symptomatic of the rise of the championing of process over impact in modern life from which I feel more distanced and grumpy about every day.

Now, if you want a better idea for getting organisations to stand by their information and cough up the evidence behind it, then look no further than Sense about Science’s ‘Ask for Evidence’ campaign. The focus is on science and evidence as opposed to health information but, regardless, the model is much more preferable in my view.

Even better, there is not a Prince 2 folder in sight.

Thank goodness for ‘Sense about Science’ – at least someone has got some sense around here.

Trust, respect and openness have felt big themes for the week.

I was really sorry not to get to ‘Sense about Science’s’ annual lecture not least because it meant I missed Director, Tracey Brown, do one of her fabulous welcomes and introductions.  The main act was Cambridge University historian, Professor Richard Evans, who examined the relationship between science, politicians and the public at the time of various epidemics in history.  You can read the transcript of his lecture on the Sense about Science website and there’s a discussion on The Guardian as well.  Thoroughly absorbing, and his final quote is as follows:

‘These aims can only be achieved in a democratic context where state, medical scientists and the public have some degree of mutual trust and respect.’

The question I have been tussling with ever since is whether science needs at first to be at ease with itself before it can be at ease with its partners?  But, realistically can it ever be?  Indeed, should it be?  Hence the exam question as my headline today.

Today the Royal Society announced a new project and working group on ‘Science as a public enterprise’ focusing, firstly, on how scientific data and information can be shared more openly within the scientific community and, secondly, on public engagement with this information.  Details here and I’d really encourage people to make submissions.  Forgive me for a little titter though when I saw the working group membership list of the great and the good – not an ordinary soul in sight!  There’s a good piece about open data by four of the working group members in the Lancet here.

Talking of the Lancet they have also launched today a new ‘portal’ to gather evidence on how the health reforms are impacting on patients, clinicians and others. A good initiative.

And, finally, just to say that AMRC has today published its response to the European Commission’s concept paper on revising the EU Clinical Trials Directive.  Now that’s a concept none of us are at ease with.