The basis of our submission was an online survey with our member charities. 50 members or 42% of our membership responded. A highly respectable return. More so if you consider that not all of our charities will be funding clinical research.
I have written about regulatory issues on many occasions on this blog. Variously the titles of these blogs have been ‘Regulation and Clinical Research,’ ‘More on…’ etc etc. So I considered titling this one ‘Greatest Hits’ – with ‘hit’ defined as the impact of regulation rather than a cause for celebration.
But behind the stats and charity voices in our submission which articulate the problems caused by the regulatory environment, there is also cause for optimism. It is about the potential in the UK if we can only streamline processes and remove some of the unnecessary barriers. When asked whether the UK continued to be a leader in clinical research, one member said:
‘Absolutely. The miracle is how the UK continues to punch above its weight.’
And I was struck by the fact that while the majority of charities are finding clinical research harder to do they are committed to its future funding in spite of this. As the opening member quote in our submission says:
‘The NHS ought to be the best place in the world to undertake clinical research. The potential is still there, but it is not being harnessed as efficiently and effectively as it could be.’
The other story in our submission is that, while the charity has a long tail, it is a strong and growing one. Outside of the Wellcome Trust and Cancer Research UK – the respondents to our survey collectively represent approximately £80 million of funding. The top end of that scale is a funding commitment by one member of £40 million. The lower end is a commitment of £20,000. If you average that across these members that’s £2million per organisation (someone is going to tell me off for doing that very unscientific calculation!).
This morning I received a letter from the Health Secretary Andrew Lansley MP which echoed the ambitions he articulated in his speech to National Voices on Wednesday. In his letter he talks about ‘improving the quality of care to patients’ and trusting and enabling clinicians, nurses and others to realise the NHS’ ambitions. It was notable that he also said: ‘I am clear [research] has a vital part to play in our health system and in our economy.’
To do so we must develop a regulatory framework which is based on a dual principle of ‘ensuring patient safety’ and ‘facilitating good quality research.’ Essentially, that is the message my members have conveyed in our submission.
By the way the image above is a wordle created from the text of our submission courtesy of: http://www.wordle.net/.