Less haste and more speed is better for research and better for patients

The Government has today announced an Innovative Medicines and MedTech Review, beginning in early 2015. The Minister for Life Sciences, George Freeman MP, has set out a bold vision for cutting drastically the time it takes to develop and give patients access to new medicines and innovation. This news release lays out the basic aims of the review.

The language of urgency and desperation is a common accompaniment to the way in which medical research is pitched to the public.

Charities make ‘urgent appeals’ to our generosity.  Drug companies strain at the leash, only held back, they say, by red tape and grey bureaucrats.  Researchers implore us to come forward and ‘make it happen.’  Patients warn us of the human costs unless there is ‘immediate action.’ So it goes on.

They are right – or at least have every right, to make such calls. But we should be aware of the dangers to research and to patients of creating a society that is so pro-science, it forgets to ask important questions of science and itself for the matter.

At the moment, medical research has a burgeoning ‘fast movement.’  ‘Empower: Access to Medicines’ is one such lobby group that exemplifies how this agenda has come to the fore. Last week at the World Orphan Drug Congress I was struck by the number of patient organisations who came to the stand or spoke from the floor about the need for faster development times for new treatments, and speedier access to them.

Few people would deny that it takes a bafflingly long time and mind-boggling amount of money to produce new medicine; that there are surely ways in which this process can be shorted and cheapened. So no wonder Governments, major funders and regulators alike are doing all they can to make this happen – from adaptive licensing to the Health Research Authority’s (HRA) plans to establish a single approval process for approving research to happen in the NHS. (At the moment it seems everyone gets involved even the hospital porter!).

The more dangerous element to this movement is that which puts the pressure of demand – desperate and legitimate though it may be – in the driving seat. So much so that it tips the scale back towards a day when people were treated no better than guinea pigs, when doctors acted in haste or pure self-interest.

This is what is so worrying about the Medical Innovation Bill. In spite of what some patient advocates say, I fundamentally believe its passage would do serious damage to all that has been achieved in putting patient rights at the heart of the research agenda. Not to mention what it means for the enduring respect we have paid to ensuring research quality. In that sense it is the veritable wolf in sheep’s clothing. Goodness knows how it has got this far.

Clearly, as patients and the public, we have an important role in advocating for research to take place more quickly and for the fruits of its success to be made widely available. But we also have a significant role to play as active participants in research, working with researchers to make things work better and more efficiently. From being study participants to shaping its design and delivery. As the success of our clinical research networks bears witness to.

Patients and the public should be part of the pit crew not goading from the stands. That’s how we get faster, better research.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s