Why shouldn’t you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment?
Why shouldn’t we be able to expect to have that discussion with our doctor as part of our diagnosis and care?
Why shouldn’t we be able to access research evidence so we can reach an informed decision with our doctor about what is best?
The vast majority of us, when asked, want to take part in clinical and other forms of research. Those who have been in a trial are eloquent about the benefits.
Surely we should aim to give willing people the opportunity and confidence to become active research citizens, to give willing patient populations the opportunity and confidence to become a research active community?
Through this wider engagement and participation we can also grow and strengthen the numbers of people actively involved in designing, shaping and delivering research with their partners in the health professions and research.
At the moment too many barriers are placed in people’s way.
That’s why NIHR’s ‘OK to ask’ campaign being run today, on International Clinical Trials Day, for the second year running is so important. It is about removing those things that lie in our way to our active role in research. It is important to remember that the original idea for the campaign – and its shaping -came from patients and carers.
A crude instrument it may be. Fledgling in its implementation at the moment, I would certainly agree. But it is a start and we have to start somewhere.
What’s important is that we have a long-term plan and commitment to work towards those three aspirations I set out at the beginning of this blog.
Today, the National Institute for Health Research (NIHR) has published its strategic plan for increasing citizen engagement and participation in health, social care and public health research (2014-2019) as part of a document entitled ‘Promoting a research active nation.’
The plan sets out a formal NIHR programme of work – called PROACTIVE for short – which it aims to support over the next five years, working with citizens, health professionals and NHS staff, funders and other research organisations to enable citizens to: choose to take part in research; use the evidence on which their care is based and; have a good research experience and recommend it to others.
In some ways there is delicious irony in the fact that we run ‘Ok to ask’ on International Clinical Trials Day (20th May) which is itself a celebration of the day when James Lind started his famous ‘scurvy’ trial on the 20th of May 1747. After all, the seamen who took part in his trial were most definitely ‘subjects’ of inquiry as opposed to participants. But we have much work still to do.
Looking forward to my visits to the Maudsley and Barts later this morning.