pharmaceutical industry

It’s high time we got over it.

Pretending it doesn’t go on is foolish.

Suspecting the worst every time they come near to one another is energy-sapping.

No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way.

I mean, of course, charities and pharmaceutical companies working together.

This is one of those issues that provokes the strongest of reactions from people.  I completely understand why but a dogmatic rejection of the idea seems profoundly wrong.  We have to find ways to enable these sectors to build bridges and work together in ways that the public can trust and feel confident in.  Their joint-working will not only lead to better medicines but also better behaviour by companies and charities.

Today National Voices, a membership organisation of charities working for a stronger patient voice in health and social care, and the Association of the British Pharmaceutical Industry (ABPI), have published a new guide to support charities and companies to forge collaborations in a transparent and effective way.

It sets out four principles on which these partnerships should be based: clarity of purpose; integrity; transparency and independence.  It also goes one step further than work by organisations such as the Association of Medical Research Charities (AMRC) in providing practical advice and support that will help charity and pharma staff think through the practicalities and governance of making such partnerships work.  In my experience it is often fuzziness and fumbling over the latter that causes most problems to staff but also in how things are handled in the public domain.

The guidance comes with an exceptionally strong provenance in terms of its methodology and who was on the Steering Group.  Not least the Group’s Chair, Harry Cayton, who is Chief Executive of the Professional Standards Authority and who says in a guest blog on the ABPI website today:

‘Previous guidance and direction does exist in this area, but there is nothing which covers the full range of issues, addresses charities and industry together, or fully promotes mutual understanding. We feel this is a valuable contribution to an issue that should ultimately lead to genuine benefits for patients. It is now up to companies and charities entering into collaborations to ensure that these outcomes are delivered.’

I commend it to you all.


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….

Or should that be silly pharma…I don’t know.

Yes, our colleagues from pharma have stolen the march on everyone else and got the silly season off to a grand old start.

I am referring, of course, to the leaked memo from the European and American pharma trade associations dutifully covered by Ian Semple at The Guardian on Monday. The memo lays out a strategy for heading off the campaign for greater transparency in clinical trials data (as successfully spearheaded by AllTrials) which includes getting patient groups to front the pharma counter-offensive. Article here:

You know there are all sorts of things that occur to me when I read these sorts of reports. In no particular order:

  • It reads like the sort of technically brilliant but politically stupid thing I might have written as a lobbyist (yes, sadly, I was one of those) twenty years ago.
  • I seem to remember that the MP who I worked for even longer ago than that, refused to take any call or read any letter written by someone fronting-up a campaign or cause on behalf of another.  ‘If they can’t speak to me direct then…’ he would say. Perhaps if more legislators took that line today we would see a rapid change in the practices of our lobbying industry – way beyond that which a register or legislation is likely to achieve.
  • Back to pharma and patient groups. Some of the latter such as the National Voices umbrella group of charities and voluntary organisations have been quick off the mark to condemn the memo and its implication that they can be bought. Others have been less so. I hope those in the latter camp do come out soon and distance themselves.  Yet I fear some patient groups are simply becoming more conservative by the day and, at this very moment in time, are spinning round in a quandry as to what they should do, evaluating all the possible things that could go wrong for them depending on their decision.  A bit like ‘Scoop’ in ‘Bob the Builder.’ What’s that about moral compass I hear you say?
  • I didn’t used to think this but I can feel myself moving to a position where I believe there should be a ban on charities receiving pharma funding.  Failing thatimum, they should be legally required to declare all monies received and the purpose. Otherwise some day a charity – and form suggests it’s likely to be the good but misguided rather than the rampantly criminal – is going to come a real cropper.
  • The best thing that the UK’s own pharma trade association, the ABPI, could do is openly say the memo is not something it subscribes too. Or somehow let it be known that its silence is a signal of utter disdain.
  • It is ironic that a sector which has pilloried the European Union for the last ten years for making research harder to do, should suddenly find solace in its tendency for delay and obfuscation.

But the really, really silly thing is that anyone could seriously take a position that transparency is bad for research and bad for patients.

As I update this in the evening it is only right and proper to point out that the associations referred to in this blog – EFPIA and PhRMA – have today issued their proposed principles for Clinical Trial Data Sharing.  Lots of coded language in there I think you will find….

Earlier this week Patient View published the results of its annual tracker of the pharmaceutical industry’s reputation among patient groups.

The latest study surveyed 600 patient groups (72% of them from Europe). As well as asking patient groups to rank 29 pharmaceutical companies by various indices (such as whether their practices were patient-centred) – Lundbeck came top – they were also invited to comment on the overall reputation of the sector.

Only 34% of the patient groups said that the industry’s reputation was ‘excellent’ or ‘good’ in 2012.  This is down from 42% in 2011.  40% said that it had actually declined and 48% cited the industry’s poor record for transparency as a reason.  Patient View’s report also notes the concerns expressed by patient groups over company practices with regard to the reporting of clinical trial.

Last Friday I spoke to a packed hall of researchers, clinicians and patients at the Berkshire Healthcare Research Collaboration.  The first question from the floor was from a patient and it was on this very subject of transparency.  Myself and other speakers were also pigeon-holed on the subject by other attendees at the close of the session.  The same has been true at many other meetings I have spoken at over the last few months.  Meanwhile the AllTrials petition numbers climb steadily past 8000.

I’ll let you draw your own conclusions from the above on whether you think this issue matters to patients or not.


Current Controlled Trials (CCT), which aims ‘to increase the availability, and promote the exchange, of information
about ongoing randomised controlled trials worldwide,’ has appointed a new advisory board to help it in its work.  Other than yours truly, the Board includes Ben Goldacre and Paul Wicks (PatientsLikeMe) among its members, and is drawing on international expertise as well.

This is a really impressive operation with real ambitions to innovate and improve the information on trials that is available to professionals and the public.  So you might want to bookmark their blog or become a follower to stay up-to-date with new developments.

I feel rather honoured to have been asked to join and am very excited about getting down to work.

I thought this short piece by David Shaywitz in US Forbes Magazine was terrific.

David examines three problems identified by the pharmaceutical industry as holding them back, and proposes solutions to each.  The first seems to follow on neatly from my blog on Saturday which looked at the venture philanthropy tactics being pursued by charities to fill the translational gap in medicines development.  He effectively suggests that this part of the landscape should be left to charities who have a better motivation to pursue it, and pursue it well.

In the second, he says that industry should re-focus its thinking and spending so that it’s not just investing in the science but putting effort into helping patients get more value from their medicines.  That means, as he says, more upstream involvement of patients in product development to ensure its outcome better reflects patient experience and the choices and behaviours they will make when managing their condition.

The third is about regulation and red tape…..  I quite liked his arguments about how the cautious behaviours of pharma are caused by an inflated perception of risk and obstacle.  I had the same thought in my car the other day.  It has those little beepers that tell you how close you are to things when reversing or parking.  I listen to those things far more than I should and my parking skills have taken a real nose-dive.  Anyone know how to turn them off?

From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market.  More specifically it looks at the ‘venture philanthropy’ model being adopted by charities there to support clinical trials.  I’m not quite sure I’d characterise it as the ‘desparate’ lunge that the journal suggests, more an evolution in behaviour engendered by many factors; austerity and costs are just two.  It is also a quite deliberate and strategic move to foster innovation on their part.

We are seeing the same pattern emerge here in the UK.  In just the past month we have seen our two largest medical research charities both announce ‘venture philanthropy-like’ initiatives – Cancer Research UK and the Wellcome Trust – to boost drug development and fill the ‘translational gap’ as it is often termed.  [‘Scope’ have also announced something similar in the disability area.]

This is on top of what UK medical research charities are already doing to support clinical trials. If you want to understand more about venture philanthropy you might want to look at PhilanthropyUK’s website and this article in particular which talks about some of the areas in which venture philanthropy activity is growing – medical research being one of them.

The brute reality though is that I think this is a strategy really only viable for the larger charities who have the funds to invest.  But I would be interested to know whether the criteria they are adopting for investment decisions encompass the possibility of putting money into ideas being generated by other charities who do not have the scale to take them further?  I don’t see why not.  That could be a potentially important stimulant to greater collaboration between charities.  Or perhaps I have just got the wrong end of the stick, although surely it’s about investing in, rather than the provenance of, the idea.

Meanwhile PatientView has published the latest in its surveys of global patient group opinion about industry – this time it’s the turn of medical devices companies to come under the spotlight. In reputational terms, this sector within industry comes ahead of pharmaceuticals and biotechs in how well they are rated generally, but share the same dismal record in terms of ethical marketing.

This ahead of the annual conference of the Association of the British Pharmaceutical Industry (ABPI) in London later this week entitled ‘Can we afford innovation in medicine?’