Every so often a story and resulting furore crops up in the media about charities, patient groups and their closeneness to industry and, in particular, pharmaceutical companies. Journalists and the public will quite rightly ask: is it in the public interest?
I can well remember my first encounter with big pharma in my early days of working for a medical research charity. At that time, the company concerned was the only one with a treatment that looked likely to be approved for use in the UK for this particular disease (it did not get approval in the end as it happens). Part of its strategy was clearly to enlist our support in the hope that we would campaign on their behalf for this drug to be made available.
To say they were cumbersome, aggressive and patronising in how they went about this would be an understatement. They would have called it relationship-building no doubt. I would have called it a mild case of bullying. Its effect was counterproductive not least in making me, us, extremely defensive when the more responsible companies with better products and a more sophisticated attitude to partnership came round. But on the other hand it also made us define exactly what we wanted these partnerships to look like, in whose interests and in what manner we wanted them conducted. It led to the development of a clear policy that is now publicly available on the charity’s website.
For some time I also worked in mental health and was dismayed about the way that industry acted and behaved. No wonder industry has had such a large moutain to climb in recent years.
But that was then and this is now. Last week AMRC held a ‘think-tank’ with representatives from both industry and charities which focused not only on some excellent examples of how the relationship has changed but also on what needs to happen next to continue build public confidence – from ending the under-reporting of negative results from industry-backed research, to steps to improve transparency and ways of involving patients in every aspect of how research is taken forward.
Perhaps what lies at the root of the ongoing concern is a fundamental lack of public understanding not only about the cost of research and the development of new treatments – impossible to sustain without industry involvement – but also the collaborative effort that is required to bring drugs and therapies to the bedside; a collaboration that must and does involve Government, academia, funders and industry all along the way. You might also be interested in a report recently put out by the Alzheimer’s Research Trust which showed how industry money will often focus on developing new discoveries made possible in the first instance by charity and public investment.
But charities and industry also have a shared responsibility to be more open in explaining to their patient groups and the wider public why they are working together, with what aim and how this happens. They public may be surprised to learn for instance, that the interaction between the two is less and less about sponsorship, marketing or education, and more about identifying the needs of patients and identifying possible opportunities for science and drug development. That is surely a good thing and entirely in the public interest.
Without a doubt there continue to be some ill-conceived if not downright dubious practices out there that both sectors need to police and change for the better – practices that will continue to undermine more responsible corporate behaviour. Things like ‘astroturfing‘ – the term used to describe the way in which some companies establish so-called patient groups which are nothing more than fronts for an industry campaign.
But on the other hand I would take issue with the claim of Sir Michael Rawlins from NICE that the public should be concerned when industry and charities join forces to press their case for a drug to be approved. Methinks it is a case of the regulator feeling the heat and protesting too much.
So, what next? In the coming months the Association of the British Pharmaceutical Industry (ABPI) is likely to push for ever greater openness by its members about this relationship in the next iteration of its Code of Practice. I believe that charities should match this with a similar commitment to transparency as AMRC set out in ‘Essential Partnership: principles and guidelines for working with industry’ – from having publicly available policies on how they work with pharma to reporting who they work with in their annual report and accounts. Like this by BHF…or this by the MS Society.
In all this debate it would seem that the independence of the charity sector is key to reassuring the public. Too often I think we expect people to take this for granted. But in these more cynical times, it is only through greater transparency that commentators, patients and the public will see why working with industry is in the public interest and the efforts we go to to maintain this independence.