Medicines in the public interest
I imagine many of those attending the INVOLVE conference next week will have read, if not heard about, Ben Goldacre’s new book Bad Pharma. I have no doubt it will be one of the hot topics of conversation among delegates and rightly so.
Bad Pharma is an important book. In fact I would say it is one of the most significant books to have been written about medicine and the public interest in recent times. Above all, it has ignited a long overdue public debate about issues that have rumbled in the background of drug development for many years.
In the conclusion to his book, Ben Goldacre pinpoints missing data about clinical trials as being at the heart of the problem. He sets out a range of actions that we can all take – the public and patients included – to achieve greater openness, transparency and accountability in the conduct of trials. A number of the questions he urges people to ask before taking part in a trial will resonate with many of us who have made this same case over and over again. I am sure they will also be echoed by Sir Iain Chalmers, Founder of the Cochrane Library, who has long-championed patients’ interests in research and delivers the keynote speech which opens our conference.
Shortly after publication of Bad Pharma, GlaxoSmithkline announced a new policy of openness with regard to its clinical trials data. It is a welcome move. But, as I wrote on my blog at the time (http://simondenegri.com/ ) ‘one swallow does not make a summer and the rest of the flock must follow.’ We should not overlook the fact that Bad Pharma also scrutinises the behaviour and practices of our regulators, the medical profession, researchers and patient groups. All must respond openly and appropriately and practices changed to ensure public confidence in the way new treatments are tested and developed. Our role is to make sure they do, each of us from our respective positions.
We must also make the most of current opportunities to examine how we can strengthen the rights of patients in research more generally. This week the Department of Health launched a public consultation on proposals to revise the NHS constitution. Published alongside the document were comments from the group that was set up to review the current document. This group includes Jeremy Taylor from National Voices who is speaking at our conference on Tuesday. Collectively they have called for the constitution to have more teeth and for the need to improve public awareness of its existence.
During the conference we will undoubtedly reflect on the Department’s proposals with regard to the handling of medical records to facilitate research into new treatments of patient benefit. INVOLVE has been actively involved in the debate about the use of personal data for research purposes for many years, most recently giving evidence to the Caldicott2 review on information governance in health and social care. The review panel is expected to make its recommendations in the next few months. As we consider our response on the NHS constitution the arguments in favour of strengthening patients’ right of access to the evidence that underpins their care – including clinical trials data – feel stronger than ever. Data-sharing should work both ways.
Public involvement in research is bound up with the notion that we have the right to question the way research is conducted, to improve its quality and ensure it is in the public interest. Asking challenging questions is how we got here. Identifying those that bring us together as a movement is a priority for every INVOLVE conference. Together, we have a powerful voice that can make change happen.