Why the Rise in UK Participants?

Recently, the National Health Service (NHS) in the UK announced that there was an increase of NHS patients participating in clinical research. 

One astute observer and occasional blogger on our site, who also follows @Clin_Trials on Twitter, Paul Ivsin, asked “…any insight or context as to why there has been a jump? Is it because of better reporting, or are more people really participating?”

So I reached out to a couple reliable sources in the UK, to find out what they thought. One is Philip Ward, our European Editor who writes news and blogs for Applied Clinical Trials, and keeps us informed of clinical trial activity in the UK and Europe. The other is an executive at a CRO in their UK location.

Both responded that the increase is hard to actually pinpoint. The NHS investment into clinical research brought the advent of NIHR and CRN. This creates, according to one source, a significant research infrastructure, but one accompanied by bureaucracy. As part of the infrastructure, and as a requirement for additional funding, sites must record recruitment for NIHR CRN studies, which could cause the rise due to better reporting.

At the same time, there has been a concerted effort to involve more patients in clinical research, from many fronts. Those drivers include:

• More political will and support for research over the past couple of years

• BMJ’s campaign for more transparency and openness in research data

• Patient groups and associations

• A swing of public perception about pharma companies “who seem to have done a better PR job by promoting their healthcare efforts. They're not demonized quite as much in the UK as they were a few years ago.”

Interestingly, both sources also spoke of the OK to Ask campaign, which was launched in May as part of International Clinical Trials Day. This initiative aims to increase the awareness of clinical trials in the UK population. Phil personally noticed several "OK to Ask" posters hanging in a UK-hospital’s outpatients department.

But weighing the public drivers against this fact: The number of clinical trials approved by the MHRA has decreased from 1132 total (912 commercial) in 2005 to 952 total (728 commercial) in 2012. “It is somewhat counterintuitive to suppose that total subject recruitment into cutting edge clinical research has risen so sharply in an environment where the number of trials of new medicines is decreasing. It may be that we are getting better at recruiting to studies, which would be great. I’m not sure we can be certain that the figures presented support this.”

And, if NIHR is adopting more and more studies every year, then subject recruitment into NIHR studies is certain to increase.

So based on all the above, it appears there is more work to be done to uncover the true meaning of the statistics and the real patient participation situation in the UK.